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Read Our Guestbook Name: Heidi Isaak CommentsI am sorry to hear about Lily but glad to hear she is doing better now. I will pray that Charlie stays healthy and that all of you leave for your vacation healthy. Name: Melinda~FOA/RA!~ CommentsHi there my little cutie boy, I hope you don't get sick either. And I hope sissy feels better soon. My thoughts and prayers to you all. Name: Jen and Kyle Fowler CommentsCharlie, we love your new video clips! Hope to see more soon! You are the best! Name: Steve Pohlen CommentsCharlie you are an inspiration to all of us. You are soooooooo darn cute and happy. Chris and I are thinking of you. Take care family. Love Chris, Steve, Olivia, Anna, Theo Name: Steve Pohlen Comments
Name: Miss Lin CommentsHello my dear friends, I bet you thought I'd forgotten you didn't you? NO WAY I SAY! Glad to hear the fundraiser was such a huge success. I had intended to come, but somehow it would not fit into the May schedule. I do think about you all the time and check this page frequently, even if I don't always say "Hi". I do hope your trip goes well. It sounds such an exciting adventure. Keep well Charlie. Big Hugs to you all. Miss Lin :):):) Name: Rachel Rake Commentshello to my two favorite customers at macaroni grill lily and charlie. just wanted to say hello and send you my love and charlie is my angel. lily and charlie and the Sykora family will always have a place in my heart. smile Name: Heather CommentsThe pictures for May are too cute! Charlie sleeping with his thumb is the most precious sight. Lilly is such a good sister, touching that nasty fish and then making sure Charlie gets slimed too:) Heather Name: Heidi Isaak CommentsGlad to hear the fundraiser went well. Hope you took photos so we can see them. Love, The Isaaks (Heidi, Randy, Emma, Armond, and Mary) Name: Cyndie Fishman CommentsCharlie - just playing on my computer tonight and thought I would visit your website. I've missed you over the week-end so be good and see you Tuesday. Name: Callie Yeater CommentsHi Charlie and Family, Let me introduce myself my name is Callie Yeater and I live in KC too. I am 22 and have Cerebral Palsy. I found your website through another SMA families website www.caringbridge.org/canada/babyjacob Your a cutie pie charlie. If you would like a new friend please contact me. Hugs to you. Callie Name: Sophia Doebbert CommentsDear Charlie: I hope you have a super successful Barbeque-Blues Fundraiser tonight! Wish we could be there to celebrate with you & your family. hugs, Sophia Name: Dennis Zwachs CommentsWishing you all a very nice Memorial weekend,so great to be able to visit this website, keeps us intouch with your family. We love you all. Denny and Jean Name: Mimi Karpin CommentsI am so glad to have seen Charlie's site! It is wonderful to see so much love and support for Charlie. I am glad to have a better understanding of SMA. Name: Heidi Isaak CommentsCharlie- I am so glad you liked feeling the fish. I don't like to touch fishes so you'll have to do it for me. You are growing up to be such a handsome young lad. Your photos make me smile so thank you mommy for keeping them updated. We enjoy going on your web-site to see photos since we can't see you in person very often. Looking forward to seeing fun summer photos! Love, The Isaak family (Heidi, Randy, Emma, Armond, and Mary) Name: Michelle Behmer CommentsHi Charlie! I'm so happy that you are healthy and doing well. We've been in the process of moving over the last several months, and I haven't checked your journal lately. So, I was thrilled to see that you are out and about and having fun! I will keep you and your family in my thoughts and prayers. Can't wait to hear all about the fundraiser! Much love, Michelle,Jim, Ben,Amanda, and Jack Name: Miss Lin CommentsHowdy HANDSOME! Just checking in to see how things are going. Sooo excited to hear that nasty cold went away. Did you get any more teeth come through? I was sure you'd have a few more by now. I'm still visiting little babies in the home and I really really love my job. I am so blessed because everyday I get to meet wonderful people like you.....EXCEPT You are pretty unique, very special and have the best smile on the PLANET. Stay Healthy Charlie. Love and HUGS to Lady Lily, Cool mommy Kim, Silly Daddy John, and furball Maggie xoxoxoxox Name: Angela Edwards CommentsHi Charlie and Family, I am a former co-worker of your mommy's when she worked at Valentine-Radford. I just learned of your condition today when a good friend of mine, Julia Koncak, passed along your story to me. I don't know much about your disease but know that your mommy and daddy will get you the best help that they can find. I don't know your daddy but know your mommy and she is truly one of the nicest and caring people I have ever met. You are in wonderful hands. I will pass your story on to others to make them aware of your condition and the condition of others in your situation. I will keep checking your website to see how you are progressing. I wish you all the best of luck in getting help with this disease. My thoughts and prayers go out to your family. Angela Edwards Name: kate althoff CommentsHi there, Sykoras! This is Mary's friend, Arse. I have been saving your website in my inbox and just checked it out. I have also been keeping you all in my prayers when I remember. Great to see the beautiful faces in these pictures. Your little Charlie is so fortunate to have such dedicated parents. And Lily is as gorgeous as I remember her! (I will never forget her and grandpa sleeping together at Mary and Kramer's wedding shower!). Remember that God doesn't give us anything we can't handle. Thanks for sharing your stories! Arse Name: Mike King CommentsHi Charlie, Just checking in to see if you had any new pictures. Say hi to your parents and sister for me. Love, Mike Name: Kay Landers CommentsHi Kim and Family, What a great website! I had not seen it before, and I was glad it was included with the Atonement prayer request for your event. It sounds as though you've had a difficult time recently. I pray for Charlie's continued improvement in health, and for strength and God's peace for you and your family. I regret we will be out of town for the barbeque...it sounds like FUN... but we intend to support it through the purchase of tickets. Peace, Kay Name: Miss Lin CommentsDear, dear Charlie, What a rough time you've been having, and what a scare you gave your poor mom! I do hope this nasty old 'cold' goes far, far, far away and never comes back. How dare it mess with my Charlie! I recieved your lovely note the other day and thoughts of you brightened up my day, I'm so pleased my parcel found you. I can't wait to come and visit you soon. Stay well Charlie, and BIG HUGS to you, Lily, your mom, dad and Maggie xoxoxoxoxoxoxox :) Your friend always Miss Lin xx Name: kim kobe Commentshi, charlie! hoping you are doing well and taking care of your mommy - she's working very hard to take care of you and all your friends! k. Name: Dan and Christina Hynes CommentsCharlie is absolutely beautiful! He is lucky to have a great big sister and two loving parents. We think of you often. Wish we could go to the fundraiser, but are expecting our first little one around that time. Love to all of you. Name: Bev Koehler CommentsAs a neighbor of Kim and John's, and after reviewing all of the photos on Charlie's web site, we are witness to the amazing Sykora family. Charlie is blessed to be surrounded by his loving parents, sweet big sister, caring grandparents, family, friends and the recipient of great medical care. What an adorable little boy. Kim and John, we have total respect and admiration for you for loving Charlie unconditionally and for making his life as normal as possible. We all have so much to learn from you, watching you find joy in every little moment with Charlie. We all have a purpose, and all life is precious. Name: Linda CommentsHi "Charlie" and Family, My name is Linda Horner and I am a member at Atonement. I pray for each of you on a regular basis. My husband and I lost our first child at age 3 1/2 of leukemia on Easter Sunday of 1980. She was diagnosed at 2. I just want you to know I truly feel your feelings as you take this walk with God at your side. Our faith and love for God truly is what helped us. My husband also passed at an early age from cancer. I listened as you gave your testimony at church that evening with love, understanding,empathy, and yes, a few tears. Please know many care, love you all, and are praying for you. Blessings, Linda Horner Name: Cheryl Beck CommentsHi Charlie, Hi Kim, John, & Lily, I am so sorry that you have been fighting this darn cold Charlie. Hopefully you are feeling better now. Kim, you are such a beautiful spirit. I read the posting in your journal about this past year and I have to say, God did choose you guys. Who better to take care of this little guy? I am so in awe. Happy Mother's Day my friend. Name: Lin Fennell CommentsHi ya Handsome, Thought I'd drop a few lines to say "Hi" and see how you're doing. I just got back from England and you never guess what happened ... someone stole my purse. For a while, I wasn't sure if I was coming back to America, which was a bit scarry, but I finally got all my papers and arrived back here on Saturday. I was so happy to be home again with all my boys. I was sorry to hear you had been poorly. I do hope you are over that nasty cold or whatever it was you had. I do miss coming to see you and I talk about my "Brave little Charlie" all the time. You are my inspiration and I know that thinking of you helped me keep things in prospective, especially when I was in the London Passport and Immigration office. Thank you Charlie. Thinking of you all the time. Hi to your mom, dad, Lily and Maggie. Your friend Miss Lin xxxx :) :) P.S.Oh by the way, did you recieve a parcel from me? I sent it on April 25th before I flew to England. I hope it found you OK! :) Name: Mary CommentsHi Charlie! Wishing you joy and blessings on these beautiful warm spring days! I have used several pictures of you, with your bright beautiful smile, as part of my 'cherished pictures' screensaver. Thank you for giving us a smile every day! We are thinking and praying for you and your family always. Say 'Hi' to Mom, Dad, and Lily! God bless you! :D Love, Great Aunt Mary and Great Uncle John Zwach Name: jim zwach CommentsAlways in our thoughts and prayers jim and emily zwach Name: Jean Zwach CommentsMary Jo gave me this website, I am thrilled to be able to see you all. We keep you in our prayers daily. We love you all. Denny and Jean Zwach Name: DR MGBADA ONYEORU CommentsI DEY HEREOOOOOOOOOOO Name: lou thompson Commentssweet charlie, you look so well and we are praying everything is going great. we are mailing our donation today for your barbeque. we love you and pray for you daily. rusty,lou, gray & annie thompson Name: cyndie fishman CommentsThanks to mommy Charlie I now have your website and can show you to my husband so he will know what a very beautiful little boy I go to play with every Tuesday and Wednesday. Name: cyndie fishman CommentsThanks to mommy Charlie I now have your website and can show you to my husband so he will know what a very beautiful little boy I go to play with every Tuesday and Wednesday. Name: Eisenbeisz CommentsWe all enjoyed visiting your WEB site, Charlie...great photos! We will keep in touch again soon. Hugs to you and Lilly. Ed, Shelley, Cody and Ashley Name: shel CommentsHi Charlie! Hope all is well with you and all your family. I was thinking about you today and thought I would say hello! Take care, give mommy and daddy and sissy smiles! Name: Steve McClain CommentsHey Charlie, I had a chance to meet your dad last night and he told me all about you and your great family. I was impressed to hear that you have your own website and was touched by your incredible story. Thank you for sharing it with all of us. I'll be sure to stay up to speed by checking in regularly! Steve Name: julie welsh CommentsHi guys just wanted to check in to see how things are going. I will talk to you soon. You are in my thoughts and prayers. Love Julie Name: Chris Cushing CommentsHi Kim - Thanks for sharing Charlie's site with us. Pam and Mike have been keeping us posted on his progress. I'm glad to hear that he's on the move -great pics! I'll bookmark the site to keep it touch...miss you at bookclub! Chris, Don, Erin and Megan Cushing Name: Christy Flannery CommentsWhat beautiful pictures. He's a darling boy. I love your Florida pictures -- looks like you all had fun. Kudos to all the progress that Charlie's made. Name: Mike King CommentsWhat a fantastic site! Look forward to seeing you again soon. Kinger Name: Heather Dunham CommentsYou pictures are great!! And your children are so beautiful!! Does your son have type one? or two? I have a son named Kaige he is type one he will be 2 next month. Your son looks very strong .Keep up the great work!! Heather Dunahm. Mommie to Kaige and Paris Rain Name: Dave, Alli and Tommy Iverson CommentsCharlie - Looking great in the shades! I hope we get to see you this summer. Love The Iversons Name: MJ CommentsHi my friend!! Did you know that <img src="http://www.mjthesmaqueen.com/snags/ItsSpring-jumpingFrog.gif">??? I hope that you had a very happy Easter! I got to go to Ohio and spend time with my family and friends. I put pictures up on my website so <a href="http://www3.caringbridge.org/ny/mjpurk/photo.htm"> check it out </a>, if you want to. I'm so glad that <img src="http://www.mjthesmaqueen.com/snags/srungturtle.gif"> Love and warm Spring hugs, <a href="http://www3.caringbridge.org/ny/mjpurk/"> MJ </a> Name: Melinda~FOA/RA~ CommentsBeautiful, the pics from Florida are great. Everyone seems to have enjoyed there vacation. I have to say that the pic of them two facing each other is by far my fave. It is so sweet. What smiley faces. Name: Gwen Ficklin CommentsHi All, It's been a while since we have seen you and we have been thinking of you a lot. This is our first visit to your website and it is fabulous! Hope that your Spring is healthy and that we get to see you soon. Blessings, The Ficklins Name: Ashley Allen CommentsDear Kim, John, Lily and Charlie: You all have such a beautiful, strong family. Thank you for sharing this website with us. We hope to see you all before too long. Much love, Ashley, Adam, Siena, Alexa and Lucas Name: Danielle Springer CommentsKim, it's wonderful to see Charlie doing so well, he looks so much like his daddy the older he gets. He's so cute and seems to be very happy in the power chair, what kid doesn't like powered rides? I'm sure it gives him a great sense of indepedence now. I admire you for all that you are doing for Charlie, your family, the SMA group, and all the other chartiable work that you do, you truly are making a very positive impact to this world. You are truly somebody that more poeple should model off themselves after. I love the updates on the web, makes it easier to keep in contact with what is going on, as I am sure you guys are pretty busy. Keep up the good work and may God be with you always. Name: Kate, Dan, Jack and Ellie Staker CommentsJohn and Kim, We haven't checked your site in a few months and my OH my what changes! Charlie has a great new chair and shoes and looks like he loves to bowl! WOW! We think of all of you so often and want to get together soon. You are a fantastic family !! Say hi to Charlie and Lily for us! Name: Mark Mazzarese CommentsJohn and Kim - the kids are absolutely beautiful. You are all in our prayers. We are happy to see Charlie coming along so well. Mark, Elizabeth, Nicholas and Gabriella. Name: Thomas CommentsHi Charlie. I'm an old friend of your dad's. I just looked through your entire site, and I loved it. Your family is so loving. It sounds like you're having a lot of fun with your new power chair. And I bet it's great being in warm, sunny Florida. Say hi to your mom, sister and dad for me. Name: John & Laura CommentsKim, John, Lily & Charlie - you have been in our thoughts and prayers. Kim - thank you so much for updating the web site so frequently - it has been so helpful in understanding SMA and how Charlie is doing. You are all blessed to have each other. Love, John & Laura Name: Teresa CommentsYou are such a big fella! We love your new chair, you can now run faster than Mommy (JK). Hope to see you soon. Love, Jack & Maddie Name: Miss Lin CommentsHi there handsome, Thank you, thank you, thank you for being the bravest little boy on the planet! You always put a great big sparkle in my day. Have a super duper time in Florida and tell your mom and dad that I think they are pretty incredible too. Love and hugs Miss Lin :) :) PS It was great seeing you drive your new HOT ROD....that is one cool machine. Name: janice lovett CommentsHello Charlie, you are so handsome, and I also have a granddaughter who as sma. Her name is Makenzie e Mitchell and she is 19 month. With God help we will find a cure!!! because we know that he is the cure!!!! Name: Clay CommentsI like the Hot Rod Charlie! Name: Melinda~FOA/RA~ CommentsWhat a handsome little guy, what a beautiful smile he has and he just looks so happy! Thanks for sharing your beautiful little guy with us. Name: The Butch Family CommentsSpent time on Charlies web site, and was so moved. What a lovely site and such a beautiful display of your son. You're amazing parents and you all are so lucky to have each other. Name: Sophia Doebbert CommentsHi Charlie! How does it feel to have wheels? Is it warm enough to go outside? It is very cold here in MN, so I have been practicing with my demo chair in the living room. Hugs, Sophia Name: MJ CommentsHi: I know that I am early, but I wanted to wish you and your family a <img src="http://pic17.picturetrail.com/VOL815/2822478/6549091/88274216.jpg"> & <img src="http://pic17.picturetrail.com/VOL815/2822478/6549091/88272883.jpg"> I hope you enjoy your Spring!! Love, <a href="http://www.mjthesmaqueen.com/"> MJ </a> Name: Bill and Cheryl Beck CommentsHi Guys! Charlie I was so excited to see you with your wheels! Every guy needs his wheels! I check your website weekly for updates and see that you, Mom, Dad and Lily are all doing well. What a brave and wonderful family you all are. You are getting so big! Your smile lights the world and your sister sure is a beauty, isn't she? Such a help too, I am sure. I hope we get to see you soon but don't want to bring any nasty bugs your way. Spring is coming and then the nasty bugs will be gone! Lots of love & hugs, Cheryl, Bill & all these kids!!! Name: Lin Fennell CommentsHi there sweet Charlie, I am sooooo excited that you have your wheels ... at last! I bet you'll be a pro by the next time I visit, although I have a sneeky feeling I might be in for a bit of a game of Charlie Chasing! Hope those nasty teeth are starting to behave themselves so you and your mom can get some good rest. Stay healthy Charlie and thanks for being so brave everytime I come to see you, and for giving me those beautiful Charlie smiles! Love and Hugs Miss Lin xoxoxo Name: John & Janice Hanahan CommentsHi Kim & John, Good to see you guys yesterday at the Cantina! We hadn't seen you guys in a while and Janice had not seen Kim since the pool last summer when you guys were just discovering Charlie's prognosis. We both commented we wish we could have chatted some more. He's a cute little guy! Mike Liss directed me to this site. What a great idea. My heart is heavy knowing what you guys must be going through. Please know that you are in our thoughts and prayers. John & Janice Hanahan Name: Angela CommentsHoping that your little ones are okay. Name: Colleen McCarthy O'Toole CommentsKim and John - I just came across Charlie's site and am so happy to see how well he is doing! He is absolutely adorable and is growing so big! Let us know if you need anything. Sincerely, Colleen McCarthy O'Toole @ FSMA Name: Angela CommentsYour munchkins are in my prayers -- praying they both are 100% really soon. My prayers are also with Angela Trick who is having a very hard time right now. Please remember her also. Name: The Mellors CommentsValentine pictures are so very cute. Michael, Shay and Reese loved the sledding pictures as we just went to the snow last weekend. We will have to wait to visit until the snow leaves you! You know that you amaze me-love you! Name: Michele Stowers CommentsKim and John, We love to see the updated photos. What a doll he is. There's never been a more beautiful smile. We continue to pray for you. Love, Michele Stowers Name: Elizabeth CommentsCharlie: I just had to tell you and your Mommy. Elizabeth and I were looking at your picture on SMA Support and all of a sudden Elizabeth let out "Hey!" So I went to your web site and she started just jabbering away at your pictures. It must be your big wonderful smile! I guess she likes you Charlie. I have never seen her get so excited over a picture before. Hugs,Jeanna and Elizabeth :) Name: Aunt Barbara CommentsYou have a beautiful website. I love to visit it. I try to do it once a month. Charlie has a wonderful family and I love you all. Auntie Barb Name: Angela CommentsGlad to know that Charlie is doing well. I'll be praying for him. Name: Michelle Behmer CommentsCharlie, you just keep getting cuter and cuter! I can tell from your recent pics, that you have stolen the hearts of all of your therapists! What a charmer! I will continue to pray for you, you little cutie! I am also praying for your Mom and Dad too. Kim, you are doing such a nice job with this website and obviously taking amazing care of Charlie! Much love, The Behmer's Name: Tiffany Fogle Commentshey charlie i just was dropping by to say hi and to see all the sinulaities between you and our precious baby bear. You are a cutie in all your own too though cantwait tohear moreupdates tiffany Name: Heather Carter CommentsPeople like you, Kim, change the world for the better. Living your life with strength and hope, love and laughter, courage and faith. You guide your beautiful Charlie through all his physical challenges with unconditional love and unwavering perseverance. You are truly an inspiration for all mothers. Love, Heather Name: terry-lynn campbell CommentsDearest Charlie I was looking at baby jacobs email and I guess you know that our little angel is now in heaven as he passed on saturday night in his mommys arms.i just found out reading thee newspaper . We wish you all the best baby as we all know it takes a village to raise a child ....I will write you more often now I know you are here on earth with us you ask mommy to give you 6 big hugs and 6 big kisses from me and my family take care as i care terry-lynn campbell Name: Lyn and Sam CommentsLove your pictures and we love Simba too Take care Name: Cindy & Nathan Ross CommentsCharlie I wanted to let you know what an inspiration you are to my son Nathan. He ran with me (he left me behind)in his first 5k last fall in the run for SMA in Roeland Park. He knew he was running for you that day and said repeatedly how he was going to do his very best for you. He placed second. He then ran the zoo run and placed second. He has all sorts of runs he wants to compete in this summer and Dad is arranging for him to try out for a track team in the area. He asks about you often and your name comes up in every race. Strength comes in many forms. Thank you Charlie for being Nathan's strength to run. Love you all - Cindy Name: Jamie Wolverton CommentsHey Kim, Charlie, John, and Lily! And Maggie too of course, can't forget about her. Just wanted to let you know I found this site and I love keeping up with what's going on with Charlie. I hope all is well hopefully I'll see you all soon. Name: Jamie Wolverton CommentsHey Kim, Charlie, John, and Lily! And Maggie too of course, can't forget about her. Just wanted to let you know I found this site and I love keeping up with what's going on with Charlie. I hope all is well hopefully I'll see you all soon. Name: Jamie Wolverton CommentsHey Kim, Charlie, John, and Lily! And Maggie too of course, can't forget about her. Just wanted to let you know I found this site and I love keeping up with what's going on with Charlie. I hope all is well hopefully I'll see you all soon. Name: Jeanna and Elizabeth CommentsCharlie we really like your web-site. Elizabeth likes Lion King too. We hope you are doing well and come visit Elizabeth's site for updates. www.our-sma-angels.com/elizabeth/ Name: Cheryl Parker CommentsCharlie & Lily: Thanks for the great Valentine's Day pictures. Hope you are both having a GREAT DAY!. Name: MJ Comments<img src="http://www.mjthesmaqueen.com/polarbear_val.gif"> I hope you have a very happy Valentine's Day! Love, MJ Name: Kurt Stalzer CommentsHi Charlie! It was wonderful to see you at the restaurant a few weeks ago. You looked and sounded great. Denise and I think of you often, and hope that you feel stronger with each passing day. Name: Sophia Doebbert CommentsHi Charlie! I love looking at all the new pictures on your website! Lila & I send Valentine hugs to you. I'm taking my demo powerchair for another spin this afternoon, since it is unusally warm for a MN February. Can't wait for you to get yours! Sophia Name: Jami Kay CommentsI am awed and humbled when I read your journal, Kim. Man ! What cool parents Charlie has. Blessings and prayers, Jami Name: MJ CommentsLOVE YOU GUYS!!!! MJ Name: Denise Stalzer CommentsDear Charlie, Know that you are Jesus' little angel and that He is always watching over you. Your sweet face helps us to remember that. Name: Melinda~FOA/RA~ CommentsWhat a little cutie you have. I am glad he is doing good. Please keep us updated. My thoughts and prayers are with you all. Name: Brooke Taylor CommentsHey there chunker, I can't believe how big you're getting!!! I miss you so much, but it's so nice to see how good you're doing, even if it is just through pictures. Well I love you very much! xoxo, Brooke Name: Christine Jones CommentsCharlie is a beautiful boy and I hope to see him at a BBQ meeting very soon. For whatever reason, God has given him and you a challenge. I can only imagine your heartbreak when you first discovered that he has SMA. He is blessed to have you for his parents and it is lovely to see your strength, love and hope. You are an inspiration. Name: Cheryl Parker CommentsGlad to hear that Charlie, Lily and mom and dad are doing so well. Hopefully Lily's upset tummy was just a passing thing and Charlie doesn't get sick. I also hope that Charlie's bad night was a one time thing. I know how tired mom can get when she's not getting any sleep, and when Charlie and Lily want to play with mom,I'm sure mom never tells them no!!I hope you all have a great weekend!! Name: Lucretia Dewey CommentsHi Kim. I just want you to know that you and your family are in my thoughts and prayers. You have a beautiful family and the strength that you all share shines through! I hope to see you someday soon (it's been too long) and meet Charlie and Lily! Name: Amy Weindel CommentsHi Sykora Family - I am Amy (Harrington) Weindel. I went to school with John at Creighton. Michelle Behmer gave me your site address. It is WONDERFUL. Charlie is darling. Kim, what a great site, I plan to keep up on Charlie's progress and will keep him in my daily prayers. God Bless! Name: Deb Postma CommentsHi Kim, I'm not sure if you remember me. I sat by you and your husband at the FSMA conference in June. My son Isaac is 3 1/2 and has type I. I LOVE your web page. Charlie looks great. About him preferring one side and his chest getting flatter on one side more than the other. That is exactly the way Isaac is and has been for quite some time. He will tolerate the other side some, just not as long. I wouldn't worry about it. Isaac is doing pretty well. Let me know if you want to receive the bi-weekly newsletters I send out about how things are going. I love your journal and will be checking more often, now that I found it. Give Charlie and Lilly a hug from us. Deb, Arden (husband), Jillian and Isaac Name: Wanda Wosika CommentsHello Charlie and Family, What a beautiful family you have Charlie! Hugs and Kisses to you from the Wosika's. Take care and God Bless you and your family. Wanda Wosika Name: Peggy Grossmann CommentsI worked with Glenn Beckman for years before he retired. I do't know you personally but that doesn't matter. My heart goes out to you and your parents. I will visit you again. Name: MJ CommentsHi !!!! <img src="http://www.mjthesmaqueen.com/image006.gif"> Mickey and I wanted to say HAPPY FEBRUARY!!!! I hope you are doing well today. Tell your mommy I would love to see more videos of you (hint hint, Kim)! Big hugs to you and your family! Love you bunches and bunches, <img src="http://www.mjthesmaqueen.com/MJButterfly.gif"> http://www.caringbridge.com/ny/mjpurk - My Journal http://www.our-sma-angels.com/Margaret/ - My Original Website http://www.mjthesmaqueen.com/ - My New Website Name: Auntie Kara CommentsIt was so wonderful spending a weekend with Charlie and Lily recently. They are both so precious and loving. Charlie has a truly amazing disposition and seems to take his disability in stride. I never once saw him mildly upset, irritable or impatient. He lights up for his admirers and always puts on a great smile. It's so fun to hear him talk and see how excited he became over baby Maria. It was a very joyful time holding Charlie and dancing around the kitchen. I am lucky to have had the time with both kids with few distractions. I love you so much Charlie and am proud of you. Name: Lisa Ruisch CommentsYou've had lot going on this past week. Stay strong. Kisses to all of you. My neighbor told me that she has been visiting Charlie's website after she found out from a co-worker (BV) who knows Kim. She knows no one with SMA but told me that she has learned so much from your journal as well as others and she has gained personally from the fortitude and love that comes through on the websites. You are touching other lives with your message, a great thing. Ruisch III et al Name: Tracy Satterfield CommentsHi Charlie, Kim, John & Lily: You are all in my thoughts and prayers. Charlie is so beautiful and very lucky to have you in his life. Love, Tracy Name: Chellye Patterson CommentsYou are so cute Charlie!! I will pray for you each day. I will visit you site and keep checks on your progress often. Name: shaina rappoport Commentshi sykora family- charlie is soooo handsome. i love readinga bout him. kim and john you are doing such an amazing job. i think of you guys often. shaina Name: Lori Pritchard CommentsI am a sister to Amy (Harrington)Weindel and friend of Michelle Buxton. Amy directed me to your site and wow I'm just going to add you to my list of people to pray for. My son Ben died of SIDS 12 years ago and I will pray to him to intervene too. May God Bless you on your journey. Lori Pritchard Name: michelle behmer CommentsKim, I love reading your journal entrys. It really helps me to focus my prayer toward the specifics of what you are facing each day. I will pray for good health,for Charlie's nutritional requirements, and for his ablility to maintain his swallow. Love, Michelle Behmer Name: lynda delap Commentsgreat site. i was just checking to see if the shoes were on yet. i will check back later. lynda Name: Mona CommentsHi Everyone, John and Lily it was so wonderful to see you this weekend. Anna and Sarah loved being able to have a sleep over with Lily. Kim and Charlie we sure missed you but it was fun hearing you count to 10, Charlie, over the phone. Can't wait to see you all again soon! Love, Mona, Rick, Anna and Sarah XXOO Name: Donny, Sue, Erin, Leah, Kati, & Sara Sykora CommentsHi John, Kim, Lily, & Charlie, We have read through & viewed all the great pictures on your website, it's amazing!! Lily & Charlie are adorable!! (& so are their cousins) Kids truely are the biggest of blessings! Charlie looks like a sweet & happy little cuddle bug!! We think of you often & keep you in our prayers. Take care & God Bless!! Love, Sue & family Name: MJ CommentsHi!!!! Sorry I haven't signed your guest book in awhile. I hope you are doing ok and are enjoying the winter so far. I have a new website! It is <a href="http://www.mjthesmaqueen.com/"> MJ - The SMA Queen</a>....If you want to check it out. If you don't see your website on my friends page (and would like to) e-mail me, and I will put you up ASAP. I hope you have a <img src="http://www.mjthesmaqueen.com/valmiscani.gif">! and remember, <img src="http://www.mjthesmaqueen.com/valani3.gif"> MJ Name: Kelly Kilbride CommentsHi Charlie; I thought I'd drop by and visit your page. I learned about you from Angela and Jacob. My son has a mitochondrial disease. His webpage is www.caringbridge.org/canada/kirklandk/ Thanks for sharing your story. I'm glad you're doing well. Visit us sometime. Name: Angela Trick and Jacob 16 months type 1 CommentsHello everyone! Charlie I just love all your new photos. Your mom is doing great with your website. Tell mommie thanks so much for the package today! After seeing all your new haircut photos on the chat I felt like I should break down and get Jacobs done too! I hated to see all his curls go but man does he ever look so grown up now! Hope your doing well buddy and have a great weekend. Lots of love, Angela, Alyssa and baby bear Jacob! www.caringbridge.org/canada/babyjacob www.our-sma-angels.com/jacob Name: Mark Williamson CommentsKim, what a wonderful looking family!!!! We have you all in our thoughts! Mark Name: Pete and Kathy Malone CommentsHey guys, great updates. We loved the Christmas photos. Looks like Charlie responded to Santa like all do for the first time! Wishes for a healthy 2005! The Malones Name: Christine and boys CommentsHi Charlie and family! We just popped in for an update and read about your racing heartrate. Carter and Cole thought that your body must being doing that so that you can have more MOMMY SNUGGLES :)! We pray that the last couple of days have been a little less exciting! Our love and prayers, Christine, Carter and Cole Harris Name: MJ CommentsHi Charlie: I had fun looking around your website! Your mom is doing a great job on it! Thank you for sending me birthday flowers. They are really beautiful! Hope you are having an awesome day. Tell your mom, dad, and Lily "hi" from me! Love, MJ Name: Patti CommentsHi there -- So good to get updated again on Charlie (and Lily). The pictures of Charlie with Santa crack me up, and Lily's hair is getting so long! You are all such an inspiration. Sorry we didn't get to chat at Target when we saw you in December...we were at the end of a 2 hour shopping trip, and not sure who was worse off for it, us or the kids! Andrew has been fighting a cold for 3 weeks. He has asthma triggered by colds, so we've been doing breathing treatments ...seems to be working on the asthma this time. So far, Elena only has been kind of stuffy. We enjoyed your Christmas card and letter -- very cool card and great picture of all of you! Hope to see you all again soon! Patti Name: Michelle Behmer CommentsCharlie, You are beautiful! We pray for you every night. I'm so happy that you are doing so well! love, Jim, Michelle, Ben, Amanda, and Jack Behmer Name: Tiffany MacKenzie CommentsKim, What an extrodinary boy you have! :) Children constantly amaze me in their love for life and the sparkling smiles they share especially, when they are facing daily obstacles that seem insurmountable to us "grownups". Charlie has a the most beautiful smile and I feel like I know him from visiting this site. Cyndi sent me your information and I wanted to let you know that I will keep Charlie and your family in my thoughts and prayers. I am only familiar with SMA in a very general way and now I feel a connection to you and Charlie having read your story. Thank you for sharing and for keeping people informed and updated on your daily life with this disease. It has been fun for me to see the other delta's posts and see that our DDD network is alive and well. I am living in Reno, NV and after 10 years in corporate telecom sales I am teaching kindergarten and loving it! :) I am engaged to a wonderful man and we plan on getting married some time this year. I wish you and your family all of the best for 2005 and I will be visiting this site to check in on all of you! God bless! Tiffany :) Name: Robin Grey CommentsJohn and Kim, Christy forwarded me this link, and I just wanted to say hello and that Charlie and Lily are darling! Ken and I have been in Denver for 5 years now - and still miss KC and the gang! We have a daughter, Shelby - 20 months and Chase - 4 months who was recently diagnosed with Prader Willi Syndrome - SMA was one diagnosis we were facing during our time at NICU. Your story is an inspiration and we are all going to keep Charlie in our prayers! Regards, Robin and Ken Grey Name: Christy Turner CommentsCharlie, Could you be any cuter? Especially in your halloween costume. You're an inspiration as are your parents. I think of you often and am glad to see you had a wonderful Christmas. Love, Christy Name: Ashley Burleson Kramer CommentsHi Kim, I don't know if you remember me, but we were Tri-Delts together and Cyndi Miller sent me your website. I am so touched by your family and by Charlie's story. My second daughter was born August 19, 2003 and my oldest is 3 1/2, so we were on the same schedule having kids! Your family is beautiful and I will keep you in my thoughts as you continue to brave each new day. And I will pass on the word about SMA -- this is the first I've ever heard of it. All my best, Ashley Name: Susie Rawlings CommentsHi, Charlie - I was so happy to see your pictures! You are a beautiful little boy. It sounds like you have wonderful parents and awesome medical friends. I hope this email finds you feeling good. Thanks for giving me the opportunity to meet you and sign your guestbook. Name: Cameron Montgomery Parker CommentsThis is such a wonderful way to share information to all the people in your life--and to educate us. Name: Lara Sarvadi Siewert CommentsDear Kim, Stacey sent me your website, and I just wanted to say hello and tell you that you have a beautiful family. I wish you many blessings and will keep all of you in my prayers. Warmly, Lara Sarvadi Siewert Name: Carrie Green CommentsKim, Just finished looking through your website and wanted to send you a quick note. What an amazing story you have to tell! I loved all the pictures and feel like I know your family. As I continue to pray for yall, I am glad to have pictures in my head now of Charlie and everyone else. So many of the things you talked about I wanted to cry for you. I remember the first time Gracie got her feeding tube and the endless nights...the first time it came out...all of the hours of therapies...etc. I love how strong and happy you sound. After 4 1/2 years of struggles with Gracie, I can honestly say that I can't imagine life without her. She is our constant joy and reminds us of how powerful our God is. Thanks for letting me see a peek into your world. I know there are good and bad days, just know that God is in control and that His plan is good. I'm so glad that I have this website now to check back on and to know how to pray for yall! Take care and keep your strong faith! Your amazing!! Love, Carrie Atwood Green Name: Jennifer Bishop CommentsMerry Christmas and Happy New Year!!! What a wonderful web site to keep us updated on Charlie and the family. I love the photos. Everyone looks great! Charlie is so beautiful. I know that you are not supposed to say that about boys, but he is so beautiful. What's the latest on Stanford program or TX Scottish Rite in St. Louis? Love, Jen Name: Andee Sznewajs CommentsJohn, Kim, Lily, & Charlie, We are thinking of you often and praying for you always. Matt, Andee & Sophia Name: Aimee Sznewajs CommentsCharlie, Even though I've never met you, I've heard all about you from your daddy and your aunt mary and uncle tim. I think that you are one incredible kid and I loved reading your story and your journal! Please know that all of the Sznewajs' are thinking about you and praying for you. Happy New Year! Love, Aimee Name: Auntie Mary CommentsThank you for sharing the Christmas pictures! Kramer, Claire and I were missing you all so much. Oh, and I'm so happy to hear about the electric wheelchair, really awesome news. Hugs and kisses to Lily and Charlie. Love, Mary Name: Bill and Elsie May CommentsCharlie, Your Grandmother Joyce told us all about you in her Christmas card. We are so glad to see what a happy little boy you are. Our daughter Judy lived with your Mommie and her family many years ago. She is here visiting with us now. We are sending our love and prayers to you and your family. All is well here.Come see us in Florida someday. Love, Blll,Elsie,Judy and all our family. Name: Miss Lin CommentsDear Little Charlie, Thank you for being so brave ....and ....thank you for warming my heart with your great big smiles and heartfelt (stomach) giggles. Your friend LIN xx Name: Eric CommentsThinking of you all. Have a great Christmas! Name: Aunt Barbara CommentsThis is a wonderful site. I will check in very often to keep up. Love you all Name: John Sheridan CommentsJohn and Kim, Thanks for the wonderful card and letter. We really enjoyed the website as well. The pictures are awesome and Charlie is as handsome as can be. Thanks again and Merry Christmas. John and Cathleen Name: Barney and Ann Wilson CommentsCharlie - We just read about your story and think that you and the whole Sykora family are an inspiration to us all. Our family's thoughts are with you and we wish you the very best. Barney and Ann Wilson Name: Jalene Green CommentsHis sooooooo cute his like a litte angel and i will pray for him. Name: Renee (French) Baker CommentsName: Heidi Isaak CommentsCharlie- Just wanted to let you know that the Isaak family in MN (Heidi, Randy, Emma, Armond, and Mary) pray for you every night. We have the photo of you with the MN Wild outfit on displayed on Armond's bulletin board so we see you daily even though you live far away. We enjoyed seeing you last X-mas when you and your family were in town. Hope to see you again this year. Many blessings to you and you family during the holiday season! Love, Heidi Name: Joselyn CommentsWishing the very best for your family and your little angel baby boy. ((Hugs)) Joselyn fellow pumpmom to Karla Marie (May 8, 2003) Name: Kate Staker CommentsJust checking in your site to see the changes and new pictures! Charlie is doing so well and his table looks like it is wonderful! We think of you all so often and wish we could see you more. God bless you all and have a Merry Christmas! Kate, Dan, Jack and Ellie Staker Name: Mike McDowell CommentsDear Charlie, We love you, and we couldn't be more proud of you. We love the video your mommy and daddy sent us. We admire your resiliency, your happiness, and your appreciation of the simple pleasure of playing with trucks. We think about you every day, and we miss you tremendously. You are an amazing boy, and we send all of our love and prayers. We are so glad you are enjoying your new table that Grandpa made. Those trucks sure look like fun. Lots of Hugs and even more Kisses, Uncle Mike, Aunt Kara, Henry and Maria XOXXOXXOXOXOXO Name: shaina rappoport Commentshi guys- it sounds like you did great this morning kim! i am glad that charlie is doing well. i think of you often and ahave not forgotten about that dinner for you guys. take care- love, shaina rappoport Name: Stephanie CommentsDear Kim, John, Lily & Charlie - Thank you for including us on Charlie's progress. He is one of the most beautiful little boys I have ever seen! I am so pleased that he is doing well with his surgeries and therapy. You are all in our thoughts and prayers daily. Kim, having you around as a friend is one of the things I miss most about KC. I hope you are taking good care of yourself. You are an exceptional mother! Love, Stephanie Ball Name: Sherilyn Seitz CommentsHi Neighbors, What a wonderful web site! You are terrific parents. We miss you in the old neighborhood. Please keep me posted on Charlie and let me know if I can be of help. I would love to see Lily again. What a beautiful young lady! Lovingly, Sherilyn Seitz 5438 Norwood Road Fairway 913-362-2055 Name: Rochelle CommentsGreetings, Way to go Charlie!! We just wanted to let you know you were in our thoughts. Happy Thanksgiving. Love you Great Jean, Uncle Clarence, Alison Jean, Austin, Rochelle, Greg, and Lizzy too Name: Lisa DeVry-Katz CommentsDear Kim, How are you? I am sure that you are very busy. I see Bo at the health club, and I asked about you. Your children are just beautiful!! We just had a baby ten weeks ago. I wanted to let you know that your family is in our prayers. Have a Happy Thanksgiving. Lisa Name: David and Ann Smith CommentsCharlie - Thanks for sending us your website. We had not been aware of SMA and appreciate the opportunity to become educated. Your family is an inspiration and we will keep you all in our prayers. Blessings to you all! Your adorable face and cheery smile will stay with me throughout the day! Love, Ann and David Smith, Jake, Madison and McKay Name: april harris Commentshello, you don't know me I came across his page through SMA Angels. He is such a cutie!!!We to had a little girl who had what they think was Sma anlong with other things when we finally got to the right dr it was to late they had given her other dxes b/c of other things but we finally got in with this great neurolglist Dr. Kiroy at Vanderbilt childrens and noticed the tounge and said this but b/c of het state then we decied no more testing since there was nothing we could do for her to make her any better.they are little troopers . I hope God May Bless you with many days and a cure for this awful diease.www.caringbridge.org/tn/kayla www.geocities.com/angelmomfriends5/kayla1.html these are our Mikaylas sites if you would like to see her. She also had a Kid Kart and she loved it. love and God Bless April Harris Name: Kristy CommentsTerrific sight! Hugs to Charlie (and Lily) and have a great weekend with this beautiful weather. :) Kristy Name: Margaret Godbout CommentsKim, John, Lily and Charlie...We think of you often and check in on your website to see how you are doing. Charlie and Lily, you are very lucky to have such wonderful parents. Kim and John, we know that you will probably say that you are just doing what any parents would do....BUT, you are an inspiration, and the love that I read in every entry in the website is overwhelming. We never know why we are handed what we are handed in this life, but we can chose what we do with what we are handed..and you all are amazing. You are teaching Lily and Charlie so much more than you probably realize. Take care and God bless. Margaret, Gary, Joe, Danny and Grace Godbout Name: The Clark Family CommentsHi Sykora family! We love your website. Charlie, glad to hear that you are doing so well! I'm glad that you are getting some more sleep at night! That's so good for both you and your precious mommy! We think of you each and every day! Please know that you are always in our prayers! We look forward to seeing you over Christmas break! We love you so much! Buddy, Debbie, Beaude, Bailey, Sophie, Mack and Will Name: Jim Stowers CommentsCharlie, I just learned about your new website. What a great way for us to keep tabs on you and your progress. Glad to hear your surgery went well and that you and your family are sleeping through the night. Your daddy needs his sleep so he can pick good stocks. Your mommy needs a full night's sleep so she has the energy to chase you and Lily around the house all day. You are in our prayers constantly. Never does a day go by where we don't think about you and your family. We can learn so much from the love and care that radiates out from the Sykora family. Your smile is priceless and contagious. Love, Jim and the whole Stowers family. Name: Mzrlene Fritz CommentsKim, Glad to hear about Charlie's small improvements with the bi-pap. I don't love mine either, but I consider it my friend. Charlie may not be taking real steps with his feet, but we are thrilled as I know you are with the 'small baby steps' he is making in improving his condition and your outlook. Love, Marlene & Charlie :) Name: Carol Donnelly CommentsHi Charlie! You have to be one of the cutest little boys I've ever seen! How happy you look in your photo. I will say a prayer for you before I go to sleep tonight. (and many more) So you keep smiling little fella! I will write you soon,take care, your new friend Carol Name: Gracie CommentsHi Charlie, I am glad to hear that you are doing great. Being fed at night is so great and I usually sleep great because my belly is full. I like to open my med port and see how much milk can get all over the bed. Mom doesn't like that too much, but I just laugh! Hope you have a great weekend. My cousins are coming to our house on Saturday, and my brother and sister are home two extra days this week, so we are keeping mom busy. Love, Gracie Name: Bill & Linda Sears CommentsHi John & Kim, thanks so much for including us in Charlie's web-site. Bill & I were so touched by his story and journal. Although, Grandma Ruisch keeps us informed, it's great to see his picture along with the four of you. You know our prayers are with you daily. He's so adorable and very lucky to have you as a family and vice-versa. We were so happy to hear his surgery went well. Thanks again for adding us to your list. Love, Bill & Linda Name: Sonja & John Robinson CommentsCharlie, we are so very happy that your surgery went well! You must be a really special little guy to have so many angels watching over you! Sending you our love and prayers, Sonja & John Name: Marlene CommentsKim, what wonderful news that Charlie did so well with the g-tube surgery! Feeding with a pump at night sounds like a great way for you to get some much needed rest. Since he's used to waking up, it might take a while for him to adjust. I look forward to hearing about the improvements. Charlie sounds like such a little trooper. God bless all. Marlene Name: shaina rappoport Commentshi charlie! welcome home! i am so glad that you did so well with your surgery. love, shaina Name: D. Moser CommentsDear Charlie, I am so happy to hear you are doing well. I have been checking your web site every day since your surgery. You are such a blessed little sweet one, as your mom & dad are. Continue to be strong, and keep on singing. Hugs & Kisses Debbie Name: Gracie CommentsHi Charlie, I am sure that you don't remember us, but we were next door neighbors at UW Hospital this past week. I wondered if you had a web site, and I am glad to have found it. I can still hear Charlie saying hi. I have not been able to get Charlie out of my mind. We came home late yesterday, and with oxygen are doing well. Thanks for the cookie, I was able to sneak a bite and they were very tasty. Good luck with your trip home, and maybe we will meet again. Gracie has another surgery to close the tracheostomy hole at Thanksgiving. You are an inspiration and I have been praying for you. Charlie is such a cutie and I will never forget him. Dawn & Gracie Sprecher Name: Jeanna CommentsCharlie: Sorry we did not get a chance to meet you in Madison on Thursday! We had to get back because I had a procedure on my back on Friday. So we could not stay over this time. Hope you are feeling better. I know it took Elizabeth a few weeks to get over being fussy from the g-tube surgery. Your parents did the right thing Charlie getting this done for you. It was probably one of the hardest things they had to ever do. Elizabeth is much stronger now with her g-tube. We do sneek her tastes Shhhh Recover fast God bless you little Charlie!! :) Name: Princess Kalair and mommy too! CommentsHi sweet boy! We just came by to check out your website and thought we'd say hello while we were here. We are so glad you are doing well with your new tummy tube and we can't wait until you are home so we can see you again! Tell your mommy and daddy to give your kisses for us, and tell Lily "Hi!" from Kalair! Name: Pat Allbee CommentsHey Charlie, I got to know your dad through our work and your mom and I met when we went to a football game together. You have such terrific parents. It is so wonderful to see your pictures and to read about the incredible joy you bring to those around you. Pat Allbee Name: Cinda Parker CommentsCharlie and family, Charlie you are such a beautiful, happy boy! your your Mommy, Daddy and big sis are so blessed to have you! Your Mommy is my sister Cheryl Beck's friend. She has told me all about you! My family and I are happy to see how strong YOUR family is. We will keep you all in our prayers. Kim, you are such an awesome Mommy!!! Warm wishes, Cinda Parker & family Name: GMA to Saria Clark CommentsHi little Charlie and family. So glad I found this site, you are so very precious. Keep up the good work and keep telling people about SMA, you know nothing is as precious as a child, no one can reach out to people like a precious child. Our little precious Saria is I KNOW WITHOUT A DOUBT holding out her little 18 month old hands in prayer for a cure for SMA, so that no one or no other family will have to suffer like our family did!! Charlie you are so darling. So my prayer to Saria, dear sweetie, watch over Charlie and his family, give them strength to endure this illness and above all FIND A CURE FOR SMA!!! Saria, hugs and eskimo kisses from your grammy sandy Name: Sophia CommentsDear Charlie: You are in my thoughts and prayers all day today. An army of angels will be watching over you! love, Sophia Name: Debbie Moser CommentsDear Charlie, Prayers are with you & your parent's. You are such a beautiful little guy. I hope all goes well with your surgery tomorrow. Hug's & Kisses Debbie Name: Michael Zolezzi CommentsGood morning, Thanks for setting up this website. The stories about day today life and the brighter side of what is going on in Charlie 's life is really helpful for me to hear and important for us all to remember. You are all such a strong wonderful family. My best to all of you. I hope your trip to Wisconsin goes well. Michael Name: Shannon DeVerna CommentsDear Charlie, I love your website! I'm lucky that your Aunt Mary told me about it. I will check back frequently and keep you and your entire family in my thoughts and prayers! -Shannon DeVerna Name: Joanie Weaver CommentsHi Kim and family! You did a great job with your web-site..I'm so impressed! It's obvious what a terrific mom you are. Little Charlie is a lucky guy to have you! I was thinking that our Discovery Toys which feature gross and small motor development will really help him with therapy as he gets older. I imagine you have already thought about that - if you need any specifics please let me know. I imagine there are good details in your DT Source Book on the product info page for special needs children. Please take care and know my thoughts are with you. Name: shaina rappoport Commentshi charlie- i am so glad to have found your website so that now i can come check on you often! you are so handsome and i am so glad we got to meet at the fsma conference. i hope that your gtube surgery goes well tomorrow- we will be thinking of you! love, shaina, adi, jordan, max and angel jacob rappoport www.ourshootingstar.com Name: Glenn & Doloris CommentsDear Charlie, Soon you will be on your way to Madison, WI. Our thoughts and prayers go with you. We know about the hospital there which is the finest. Speaking of "finest", you have the finest parents ever! Name: Sandy Clark CommentsWhat a great site, and Charlie is such a living doll. I continue to be amazed at how SMA touches our lives in different states and countries. Give him a big hug from Oklahoma. GMA to Saria Clark SMA 1 6/25/01 to 12/02/02 Name: Claudia Waring CommentsCharlie - Your Auntie Mona is a friend of mine and she told me all about you and your family. You are a beautiful little boy! I'm glad you are such a happy baby... what joy you must bring to your mom & dad and big sister. You take care and keep smiling... Hugs from Minneapolis! Name: Marlene CommentsGreat web sight, Kim. It will be nice keeping up with Charlie's activities. He's a beautiful child. Our thoughts and prayers are with all of you as you face this first hospitalization with the g-tube. Take care. Love, Marlene & Charlie Name: Brett Wilson & Mommy CommentsThis is such a great site, you have done a wonderful job! Hope to get together soon! Take care Name: Sophia Doebbert CommentsHi Charlie: Your new website is great! I really enjoyed the pictures of the SMA walk and the ones with your sister Lily. We will have to get together again soon and show off our new Tumbleforms! your friend Sophia Name: Auntie Mona, Uncle Rick, Anna and Sarah CommentsHi Charlie, Thanks for having us this past weekend. We enjoyed the walk, but the weather down there in KC is sure cold! Looking forward to more rounds of Old McDonald when we see you next! We Love you-(and give Lily and your Mom and Dad our love too!!XXOO Name: Michele Stowers CommentsKim Great job on the web page. It looks amazing. You have a real talent! So glad the summer vacation was so fun....looks like you had a great time. I'm so sorry to have missed a wonderful day on Saturday. Jim said it was really special and the children had a blast. You are all in our prayers and we think and talk about you often. All our love, The Stowers Family Name: Bruce Wimberly CommentsI love this book. What a great idea. Our prayors are always with you guys. There has to be some special calling for you and Charlie. What an incredible boy. It just tears me up to think that something like this happens. Charlie is so lucky to have parents that love him so much. He is in great hands. Please let us know if there is anything Laurie and I can do to help in any way. You guys are the best. Glad to here Roefest was such a success. Good luck with the coming trip. We will make sure to pray about it. All the best, Bruce (Charlie is a very handsome boy. He obviously gets that from his mom). Name: Bruce, Laurie, Elise & Carter Wimberly CommentsHi Charlie and family- We had so much fun walking in the race this past weekend! Thanks for sharing your website with us. Elise loves seeing the pictures of you and Lily and now has your pin from the race up on her bulletin board at home. We're praying for you and your family and for a cure for SMA! Love, Laurie, Bruce, Elise and Carter Wimberly Name: Ruisch III clan CommentsOh, this is so great! Even though we see you fairly regularly it is hard to stay up on the news with our families blustering about so busily! The SMA walk was fun, we were glad to be a part of it. We'll visit the site often and leave you messages Charlie! We love you tons! Auntie Lisa, Uncle Robert, Taylor, Sid and Bobby Name: Gail (Gray) Alfred CommentsDear Kim, John, Lily, and Charlie, Mary has been keeping us posted on your beautiful son and all that you have been going through as a family. Please know that you are in my thoughts and prayers, and I will continue to watch the web-site for updates. You are an amazing family and all the best to you, Gail Name: Mary and John CommentsHi Kim, John, Lily, and Charlie, The website is such a great idea! Thanks for keeping us up to date on how Charlie is doing. The pictures of Charlie and Lily are so cute! Charlie, you look so much like your daddy when he was little...such bright sparkling eyes and infectious smile! You are all in our thoughts and prayers! God bless. Love, John and Mary Name: Erin and John Christoforetti CommentsDear Sykora Family - Mary shared Charlie's story with us and we just wanted you to know that you and your family are in our thoughts and prayers. God bless! Erin and John Christoforetti Name: Rachel Scharbach CommentsHello from Germany! I am happy Kara forwarded your website. Lily and Charlie are absolutely beautiful children! Plus, they both have a sparkle in their eye. You are in our thoughts and prayers. Lots of love, Rachel, Andy, Elisabeth, and Benjamin Name: Iverson CommentsCharlie - Thank you for sharing with us. You and Lily are both so precious to so many people. We love that we've gotten to know you better over the last few months. We are expecting to see you soon - after Tommy gets off of his quarantine this winter. Until then, please keep the photos and journal entries coming! Name: Sarah Jeff and Catherine Wagner CommentsHi Kim, John, Charlie and Lily! You all are really an inspiration, and your website is fantastic. Charlie's pics are great, and we will love reading about all of his progress. You are always in our prayers! Love, Sarah Jeff and Catherine Name: Kellie Brannon CommentsKim, Your web site is terrific. It is a great way to keep everyone informed. Keep me posted on the study. I will keep Charlie in my prayers for his G-Tub surgery. Will you continue to oral feed as well as use the G-tube? He looks great in all of the pictures. What a cutie. Let me know if you need anything. All My Love, Kellie Name: Sandy Lewis CommentsHi Charlie and family! It's hard to see your beautiful little face, so happy. I donated to your foundation because of Sam Mellor. I'll keep checking up on you to see how you're doing. Name: Ed and Barb CommentsKim and John, This is so great! We will really appreciate hearing how things are going with you and we love seeing the pictures. Our prayers are with you. Love, Ed & Barb Name: Molly Lauinger CommentsDear Sykora Family- Mary has shared your story with me, and I want you to know that you are all in my thoughts and prayers! Love, Molly (Lauinger) Cesarz Name: Jen Serres CommentsName: Audrey & Jerry Olson CommentsOh my goodness, we certainly learned a lot today about SMA. Charlie this is a little set back for you and your family and all will go well in the end. Just hang in there because God will not give you something you and the family cannot handle. We are with you in thought and spirit you very handsome young man. Name: Ann-Marie Sheely CommentsGreat website... it is such a wonderful idea!! I am looking forward to all the pictures and hearing news of Charlie's progress! It was SO great to see all of you in Texas!!! Charlie has such an infectious smile... quite the cutie!! Jenna keeps asking for Lily- I wish they had more time together!! Hugs to all! PQ Name: Michele Haddad CommentsA big hug to you! Please let me know if you decide to head to Stanford and if there's anything I can do from this end. My office is less than 2 miles from there... Love - Michele Name: Patti Johnson CommentsWhat a great site and a great way to keep updated on Charlie. You are all such an inspiration. And, Charlie is a real heart-breaker....he is so handsome. Those eyes and that smile are incredible! Name: Grandpa Sykora CommentsGreat website, Charlie. I will have to use your expertise if I ever need one. Good luck in Madison. Love XOXOXOXO Name: carol Commentsyou are the cutest thing ever Charlie! Bryan and I love you and Lily and will have fun visiting your special website. xoxo Name: Lance and Lissa Melber CommentsKim and John, What a great website. Thanks for all your hard work to share that with everyone. Hopefully it will help so that you don't have to repeat every detail of every new development that we all care so much about hearing. We are here for anything you may need from us. Love, The Melbers Name: Eric Fladung CommentsCharlie, Looking forward to seeing you and Lilly and your Mom & Dad this weekend at the Roefest. I'm going to attempt the 5K run! Last time I saw you was at Pizza Shoppe. You are a part of our family meal time prayers. Love Eric...Carrie and Andrew will be at Roefest also! Name: sam CommentsSo glad you are doing this. Would love if you would come to Stanford. Name: Allie & Ian Kuehn CommentsBarb shared your website with us. It is wonderful - Charlie is such a handsome guy! Hold onto your amazing strength and courage! You are in our prayers. Love, Ian & Allie Kuehn Name: Tom & Ann Kerkenbush CommentsWhat a cutie....his great personality shows through in his eyes and smile. Loved the video of him saying no! We think of you Charlie everyday and Tom thinks of you every night because he has a bipap too! And I think he likes his about as much as you like yours! But he tries very hard to get used to it and we know you will too! We get to hear how nice you and sister Lily are from Grandma Joyce...it is so great that she lives nearby so she can play with you and give you hugs and kisses! Hang in there Charlie..we are looking forward to meeting you in October when you come to the great Badger, Packer, Cheese state of Wisconsin. You will like our UWChildren's hospital. They will take really good care of you! See you in Octobeer (ophs! well it is Wisconsin and it is Octoberfest time!) Hugs and more Hugs....Tom and Ann Name: Christy Simons CommentsCharlie....you are such a blessing to all of your family and friends! You will always be in my prayers! Name: Barb & Bill Hull CommentsKim - Your son is so very beautiful - I know you must count your blesssings often as you love him dearly. Your web site is darling!!!! Lilly and Charlie are lucky to have such loving and strong parents as you and John! Our prayers are with your whole family- Barb & Bill Name: Christina Shiebler CommentsGreetings from Park City, UT! I am a friend of the McDowell’s and am sending much love and lots of prayers to the Sykora family! Please know that Charlie and his wonderful family are in my daily thoughts! Best - Christina Name: Beau Pierce CommentsDear Kim,John,Lili,and Charlie What a dear and lovely site. I am so proud of you guys. You are an inspiration to all and you guys are my heros!! I think of you often and your in my prayers every night. All the best, all my love.......Beau Name: Joyce Richards CommentsDear Charlie and family: Well, kiddo, I always knew that your Mom was VERY talented, but your website proves it!! Great job, Kim!! Be assured that I will be a regular visitor -- not only to catch up on you and your wonderful family, but also to get back in touch with all that is good in life. And, I look forward to celebrating all the milestones in your life, Charlie -- graduations, weddings and many, many, many birthdays. You are in my heart. Love ya, Joyce, Paul, Benny and Noah Name: Trey Hawes CommentsI think "angel" is the most appropriate word here. Charlie is my new hero- what a great kid. Charlie and your family are in our thoughts and prayers. We'll see you saturday at the run. Name: Jennifer Majors CommentsDear Charlie, I just love your website. You are such a cutie and I have so enjoyed meeting you and your family. See you soon, Jennifer Name: Steve Carter and Shannon CommentsCharlie, Lily, Kim, and John, This is a wonderful web site! We wish we weren't so far away and could see all of you more often. Seeing some of your pictures makes us feel closer. Charlie, we are thinking about you and your whole family. We hope you know how much you are loved. Take care and we hope to see you soon! Steve & Shannon Name: Beth Tyler CommentsKim, John, Charlie and Lily - what a beautiful family and how lucky and blessed you are to have one another! I just love the site - all the work and updates are so helpful, thank you for sharing your story Charlie. You certainly are an incredible boy who's loved and wanted! I keep you and your family in my prayers and look forward to hearing from you soon again. God Bless and Lots of Smiles - Beth Name: Auntie Mary CommentsADORABLE site, and really informative too. Added bonus to see some dorky pictures of John. :) Any way you can attach the little video clips like the one you sent out of him saying no? Either way, keep the photos coming! We love and miss you all- Mary, Kramer and Claire Name: Judy and Don Engelthaler CommentsWhat a wonderful web site -- you've done a great job. We were so pleased to finally meet you, Charlie, and seeing your mom and grandma made us very happy; we were just sorry we didn't get to see your dad and darling sister --- maybe next time. Stay strong and happy, Charlie; you and your mom and dad and sister and the rest of your kin are always in our thoughts and prayers. Name: Cherveny family CommentsJohn, Kim, Lily and Charlie, This website is wonderful! Kara passed it on to us. You have been and will continue to be in our thoughts and prayers. What beautiful kids, and strong parents. God Bless, Jenn (Staley), Jason and Ella Cherveny Name: Malone Family CommentsYou guys are so strong and wonderful - all of you. You are in our prayers. Love Kathy, Pete, Jack, Nora and Danny.. Name: Potter Family CommentsCharlie - you're beautiful! Thanks for sharing your story. Keep smiling and stay strong! You're in our hearts. ~Laurie & Mark and Angel Marshall www.marshallpotter.com Name: aandrea CommentsCharlie,I cant wait to see your cute pictures.I just got here to the site -so I will email soon- Love Aandrea Name: The Green's CommentsThe Sykora Family, This website is just wonderful!!! It not only keeps us up to date with what's going on with Charlie but helps educate us as well about SMA. As always you are in our thoughts and prayers. We love you all, Cecil, Dionne & JaLene Green Name: Aunt Barbara CommentsWhat a wonderful website! And what wonderful parents Charlie has. My prayers are with you all. Name: Cheryl & Bill Beck CommentsHi Charlie! Hi Kim, John & Lily, This is a beautiful website for a beautiful little boy. You looked so VERY handsome at your birthday parties. I don't blame Miss Lily one bit for wanting your birthday cakes! I do too! Pink roses and all! I'm so glad you are sharing your website and your journey with us. You all are in our thoughts much more than you know. What strength you all have. Sounds like everything that can be done IS being done. You are in our prayers and our love is with you. Know that we are here when you need us. Cheryl, Bill, Trent, Heidi, Dylan, Colby, Collin, Sergei, Vala, Kyle and Susha. Name: Kate and Dan Staker CommentsYour website is fantastic! We look forward to keeping up to date with Charlie and the rest of the family! Kate, Dan, Jack and Ellie Staker! Name: Helen Miller CommentsMy thoughts and prayers are with Charlie and his family -- positive thoughts for very positive outcomes! Love to all. Name: Gary & Margaret Godbout CommentsDear Kim, John, Charlie and Lily, Thank you for this website, it will be nice to always know how Charlie is doing--as he is in our thoughts and prayers daily. Kim and John, your strength and attitude is inspirational. Please know that we are here for you--you are a special family. Love Gary, Margaret, Joe, Danny & Grace Godbout Name: Bryan & Tracy Frank CommentsCharlie, Glad to see and hear you're doing well. I promise to bring my little brother and parents to see you soon. Wuv You! Will Frank Name: Chris Harris CommentsCharlie, I'm very sorry to hear about this terrible disease that you have. I had never heard about it until I got the first email from your mom. Don't you worry though, your mom and dad will do everything possible to help you and it sounds like you've already received some great help from Dr. Bach. I'm sure that God has a great purpose for your life. Just keep working hard and fighting the disease and I'm sure you can realize His vision! And remember, miracles can and do happen!!! With love and prayer, Chris, Christine, Carter and Cole Name: Kara CommentsWe love you SO much!!!
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