Having been blessed with not one but two I-Cell angels we know first hand the joy they bring and the pain they leave behind. Our wish is that one day no other families will have to share our pain. We our proud to help support the Yash Gandhi foundation and their goal for I-Cell research!
Here's a little on our angles:
Amber Skye 9/18/09 ~ 5/19/13
- Amber packed as much personality into her tiny 13lb body as possible! She was vivacious and feisty, with an infectious giggle and kisses for anyone! Even though she was labeled as "non verbal" she was extremely expressive, managing a good amount of word, making up her own signs and even learning two words in Spanish! Amber loved music, especially Ozzy and would dance as much as her body would allow her. She was obsessed with turtles, butterflies and taking out her O2 cannula. She had the deepest love for her family, especially her baby brother Charlie. Amber defied odds, pulling through many illnesses living longer than she was expected. Although Amber was not "allowed" to eat much by mouth her favorite thing to do was stick her little chubby hand in someones drink then "drink" whatever she got off of her hand and laugh hysterically. She would always think she was so sneaky doing when she did this. Never realizing we were always pretending not to look as it brought our hearts as much joy as hers to see her play this "game".
Charlie 12/24/11 ~ 4/4/14
- If ever there was a more iconic Christmas baby it was Charlie. From his wispy, bright, blonde hair to his big, all knowing, blue eyes. He embodied the innocence and joy of every child on Christmas morning. Charlie was a solemn baby who matured into a playfully, energetic little boy! He smiled with his whole face and whoever saw it could not help but smile too. Charlie was fond of any type of music and would dance and wiggle non stop! There wasn't a food he didn't like, his favorite constantly changing. He was obsessed with cars, trucks, trains and any loud toy! His true nurturing and caring spirit showed with his love of baby dolls. As much as he loved being snuggles he was the master mover. Learning how to walk with just a regular push walker, a rare feat for an I-cell child! At times he was just as spunky as his sister. One of his favorite games to play with us was waiting until his diaper was off (or he was completely naked) then rolling and squirming away laughing hysterically. His laugh made it impossible to be stern with him! Charlies last few months were made especially bright by his puppy and fellow old soul Petey. Petey became his speech and physical therapist, encouraging Charlie to talk and walk more. They were of course also best friends. You could always find the two snuggled up on a sunny part of the run taking a nap together.