My name is Shelton McCarty Jr. (my mommy calls me Baby), and I want to invite you to join me on my Butterfly Journey! This fundraising page was created to support myself and other children with Cockayne Syndrome and to further the research efforts needed to benefit our health and stability.
Cockayne Syndrome (CS) is an extremely rare auto-recessive genetic syndrome characterized by multiple symptoms including dwarfism, easily sunburned, premature aging, hearing loss, neurodevelopmental delay, and a shortened lifespan.
Here's my story:
I was born on January 13, 2012 in Anchorage, Alaska weighing in at a healthy 6 lbs. 18 inches long, and born at 39 weeks. Prior to my arrival all my mom’s doctor appointments went well while she was pregnant with me and there were no concerns. When I first entered the world, I appeared to be pretty healthy. My delivery nurses did notice that my feet were curled upward like a rocking chair; I was later diagnosed with vertical talus. In an attempt to stretch my feet, I was casted from thigh down on each leg and my mommy had to do foot stretches on me that I didn't like! Upon being discharged from the hospital, my mommy and I had to get a hearing screening done and unfortunately I didn't pass it.
At 2 months old, after several hearing tests, it was found that I have moderate hearing loss. Since then I have been wearing hearing aids.
At 6 months old, my mommy started me on baby food, which I LOVED! My favorite was anything sweet, like fruits and even sweet potatoes. If my mommy didn’t feeding me fast enough I would bang my fist on the on my high chair tray.
At 9 1/2 months old, the doctor placed a G-tube in my belly to help me gain more weight. My body wouldn’t allow me to gain weight and I only weighed 8 ½ lbs. After it was placed I had no desire or interest in wanting to neither eat my baby food nor continue to breastfeed.
At 15 months old, I was diagnosed with Cockayne Syndrome Type 2 on April 16, 2013. After months of testing and several blood draws that I didn’t like, the Geneticist found that I had a mutation in my ERCC6 gene. (The ERCC6 and ERCC8 genes provide instructions for making two proteins, called CSB and CSA, which are involved in repairing DNA. If either gene is altered, DNA damage is not as rapidly repaired. As a result, damaged DNA accumulates, which probably leads to impaired cell functions and eventually, cell death. Increased cell death likely contributes to features of Cockayne syndrome such as growth failure and premature aging.)
Aside from the challenges that I have experienced due to CS, I'm a healthy happy baby that enjoys life and my family more than anything!! I'm surrounded by so much love and support by a large family that is very close. I have 4 brothers and sister; Teonnie 18, Taveon 14, Sonny 4, Brendan 7 months. I'm the smallest in statue to all my siblings, but they all know I'm the boss!! I love to smile, give kisses and hugs; pulling hair and lips and scratching faces, I especially enjoy if you scream or act like I'm "hurting" you!! Sometimes, I take my hearing aids out and hide it when my sissy is watching me.....and then I blame it on her! But the one thing I LOVE most of all is my mommy, just hearing her voice makes me laugh and smile.
Please stay tuned, we will be hosting a Butterfly Walk event in April or May 2014.
Also, please be on the look out for my future Facebook Page under Shelton McCarty Jr.!
Thank you for visiting my fundraising page!
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Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!