Read All About Me!

Hi my name is Kaelan Bradlee Henry!  I just turned 3 years old on January 11!  I have 2 sisters and 1 brother, Kayla 11 SMA free, Kain 5 SMA free, and Karlie 1 SMA type 1.  I love dinosaurs and elephants, watching movies, playing with my sisters and brother and of course my dog.  My auntie wanted me to be able to meet more people so she thought it would be a good idea to have a web site for my sister and me so that everyone can get to know us!  My auntie is going to tell you about me so be patient with her.  When I was born I scored high on all my apgar tests and left the hospital with a clean bill of health.  Just like all my SMA friends.  It was not until I was about 5 weeks old that my mommy and daddy noticed that something was not right.  My grandma Lynne told my mommy to take me to the doctor for a visit.  After a lot of tests, of which my auntie is not sure what ones, the doctors told my mommy and daddy that I have a disease known as SMA type 1 or Werdnig Hoffman’s disease.  What?  We had never heard of such a thing.  If that was not bad enough the doctors did not know all the stuff that Dr. Bach knows and told my mommy and daddy that I would most likely not be here for my 2nd birthday.  Boy did I prove them WRONG!

So my family went on a mission to find out about this disease and how to fight it.  We found that this was more common than anyone thought.  Every 1 in 40 people carry the gene that causes SMA.  1 in every 6,000 births is affected with this disease.  We found a wonderful new family via the internet at SMA Support and are soooo very grateful for everyone who has come to help out me and my family.

The first year of my life was a bit scary.  I had some hospital stays and it was hard for my family.  But you see I am so very strong that I fought to get better and did HURRAY!  My mommy and daddy take such good care of me I am so lucky to have them in my corner they too are fighters!  I enjoy spending time with them and everyone else that I love.

I have family all over the world.  Some of my family lives in California, Illinois, Texas, and even the Philippines.  I am very lucky that my Granny and Poppa live close to us so that they can visit often and help if my mommy and daddy need it.  I have a friend named Geri she comes to visit with me everyday.  She reads all my favorite books, plays my favorite games, and puts my favorite movies on.  She also is there for all of my other needs as well.  It is nice for my mommy to get a break some times.  I also love to play with my brother and sister they are silly and make me laugh all the time.  I am almost as tall as my big brother Kain can you believe that?  My family is amazed at how tall I have gotten. 

My mommy and daddy have me on a special diet so that I get all of the right nutrients that are best for me.  They have a lot of special equipment that they learned to use so that I am taken care of the best way!  Aren’t they the GREATEST!  I have a suctioning machine for my secretions, a cough machine to help me cough, a pulse ox to monitor my heart rate and oxygen levels, and a bi-pap machine to help me rest.  All of these things are good for me they help my parents take EXCELLENT care of me.  With all of their knowledge they are the ones to tell my doctors what is best for me because they are experts when it comes to me.  Stay tuned for more about me!