BENEFITING: PRADER WILLI SYNDROME FAMILIES UNITED INC
EVENT: Walk and Roll for PWS 2016
EVENT DATE: May 14, 2016
Hello, I would like to take a minute to introduce myself. My name is Skylar Lee Jones. I was born with a rare genetic disease called Prader-Willi Syndrome. I love to sing, laugh and play! Every year we do this really cool walk where we raise awareness and money for PWS. I always like to tell my story so everyone can really see the joy I have in life verses what they may think.
So, here it is. My story.
When I was born the doctors did not know what was wrong with me. They did many tests and finally weeks later I was diagnosed with PWS. Although it was a hard thing for mommy and daddy to swallow having a diagnosis was a start. My fight would start and never end that day forward.
Feeding was a challenge. I was not able to breastfeed nor bottle feed. I had a tube in my nose that allowed me to eat. I worked very hard with my parents to try to bottle feed but the doctors would not let me go home until I got a g-tube put in. Reluctantly my parents agreed to this surgery and a G-tube was put in and I was able to go home!
Upon arriving at home my parents were determined to get me to eat from a bottle and a week later there I was, eating from a bottle! It was not long before the G-tube was taken out of my belly! It was a lot of work and I did not like the way it felt when they took it out! I now have two belly buttons! But its okay, its just another thing that adds to how special I am.
Onward we go, from the day I got home from the hospital I was in a program called birth to three and I had physical, occupational, and speech therapy. I also had a nutritionist.
I wore an eye patch for a very long time to try to fix the muscle in my right eye. It helped a little but we have upgraded to glasses. I have strabismus and later on the doctor says I will need surgery for my eye muscles. But for now I always have the cutest glasses thanks to mommy's fashion sense!
I also have hypothyroidism and take a pill every morning to stay "regular." I also get a shot every evening, this is my growth hormone shot. I am used to it by now so it really doesn't bother me.
I go to preschool with a bunch of my friends! And although I am not talking yet I have a few words that I like to say and I know a lot of signs. I have so much fun at school and all my teachers love me! I hug and kiss them everyday! My favorite is reading Curious George books!
Well, I could probably go on more but I think you get the idea. I have a lot of challenges ahead of me but I have a great family behind me. I am strong and I am great! I will keep being a strong little girl and I know I will be successful.
I hope that you take the time to read my story and I hope furthermore you donate and register for the walk.
Every dollar raised goes to research for Prader-Willi Syndrome.
Hope to see you at the walk and thanks in advance for donating!
Skylar Lee Jones