WILL

Retrun to 22q Stories

You are here

Will Smith is a beautiful, happy little boy! He loves bubbles and going for walks in his stroller or gait trainer. We recently discovered the key to his heart is ICE CREAM SANDWICHES!! Will was born March 27th 2007 and is 3 years old. He has been diagnosed with 22q13 deletion syndrome, also known as Phelan McDermid Syndrome. He has global delays cognitively and developmentally. He does not yet walk without assistance or talk. When Will was born we noticed that his chin was recessed more than normal. At the age of 5 weeks Will had his first hospitalization for a UTI and during that stay we found out that he had renal reflux and he would later need surgery to correct it. At the same time we found out that he was suffering from obstructed sleep apnea and he immediately needed surgery so he could breathe fully. When he was 6 weeks old he had his first surgery (mandibular distraction). To complete the series he had two more surgeries following. When he was nine months old he had the renal reflux corrected. He has had 8 surgeries total. BJ and I found out when Will was 9 months old that our son had 22q13 deletion syndrome. It was heart wrenching at first, learning that your son will struggle with the everyday things that typical children do with ease but we soon realized that there are MANY BLESSINGS that so many people overlook and take for granted and BJ and I take every new success and embrace it to its fullest! The day that Will was able to go to Wal-Mart and sit in the buggy without any pillows to support him was AMAZING! When he discovered the toilet we cheered him on as he stood up and supported his weight while playing in the new found water toy! Will is now attending school 3 hours a day and uses his gait trainer to get on and off of the bus. He loves riding the bus lift and always smiles as if he is riding a roller coaster. Will has endured many medical hardships but he has the smile of a million dollars. We are so PROUD! Thank you for your interest in our family. With Love, BJ, Lajuana, and Will Smith

Latest News

Upcoming Event

Spread the Word