Read All About Me!

Hi my name is Karlie Miya Henry.  I am 1 year and 5months old.  I was born on September 14, 2003.  I live in sunny California with my family.  I have a sister named Kayla …she’s 11.  I have a brother named Kain … he’s 5 and a brother named Kaelan … he’s 3!  After my mommy found out she was pregnant with me my daddy and her had to make some important decisions.  Since my big brother Kaelan has SMA they wanted to find out if I was going to have SMA also.  My mommy had an amnio done and found out that I was a precious baby girl!!!  My entire family was sooooo excited since there are more boys than girls.  After all of the tests came back they found out that I was going to have SMA.  Of course that was not what we hoped for, but knowing ahead of time allowed my mommy and daddy to plan for my arrival. 

My due date was not until November, but my mommy had something called placenta previa and I made my entrance early.  I was born at a hospital in Victorville and then stayed at Loma Linda University until I was big enough to come home.  My family was so amazed at how much I yelled and kicked even though I was so small.  My family just thought I was absolutely beautiful.  I was able to go home after getting bigger in October, which is pretty amazing.  My mommy and daddy were so thrilled.  They had to take turns driving down to see me so it was a lot nicer when we all could be together.  I loved meeting my sister and brothers when I came home.  They love me a whole bunch and I love them.  They play with me and make me laugh. 

I have long brown hair that at one time stood straight up in the air my family thought it was pretty cute and funny.  I love butterflies, boo-bah’s, animals, and spending time with my family.  I have a friend named Rose who comes to play with me everyday and help my mommy get to do some of the everyday “mommy chores” that take up time too.  We live close to my Granny and Poppa so that helps my mommy and daddy also.  I enjoy talking on the phone when people call the house so does my brother Kaelan.  My auntie Kristy thinks that I sound like pebbles when I talk to her.

A couple of months after I turned 1 my mommy and daddy started me on the same routine as my Big brother Kaelan.  My mommy and daddy have the same equipment that my brother has, but for me like the pulse ox, to monitor my heart rate and oxygen levels, I only use this at night time.  I also have my very own bi-pap that I use at night to rest well.  I also have a suctioning machine to help with my secretions.  My mommy and daddy started me on Pediatric Vivonex and are beginning to add supplements so that I can get all of the nutrients I need.  Good thing they know so much about what is good for us!

Since my mommy and daddy are knowledgeable about what my brother and I need they do such an outstanding job LOVING us!  I am so lucky to have them for my parents!  They even take us fun places like Sea World and my Uncle Toby’s house.  We have to be careful not to be around too many germs.  Once when we visited my Uncle Toby’s house it was for an SMA Poker night to help raise money for SMA Support and spread awareness about SMA.  I had so much fun.  There were a lot of people that love me and my brother so much that they traveled just to come and meet us.  You can see all the people that love my family and attended our special night here on our site.  We are a lucky family!

Thank you, for wanting to help my family spread awareness and for wanting to know us.  Please sign our guest book on your way out and stay tuned for more about my brother Kaelan and me.  My mommy will update as she has time.