Posted September 28, 2021

George is a sweet little 2-year-old who tries hard to keep up with his 2 older brothers. This is how his mom tells his story:

When George was 3 days old, we went to our first well-baby check. During that visit with a lactation consultant, George started coughing and turned purple on us.  We all became very concerned for we did not know what was wrong with him. The doctor came in and put in a referral for George to see an Ear, Nose, and Throat specialist. We went to the ER at the children’s hospital the next day because George was continuing to have a hard time taking a bottle. When we finally were able to see an ENT, he was referred to a plastic surgeon and a sleep study. When we saw the plastic surgeon, she told us that there was a chance he would have to have jaw surgery. During the sleep study, they came in within the first 45 minutes to put oxygen on him. I knew right then he had failed the sleep study. We got official word four days later that he did fail and he was due to have surgery the following Monday, it was extremely tough.  He had bilateral jaw surgery at 3 weeks old when they moved his jaw forward 20 mm.

After he was released from the hospital, we went to a follow-up with his pediatrician, his doctor order labs to be drawn to test him for 22q deletion. It came back that he did have a deletion of his 22nd chromosome.  George had several tests done over the next few months as well as a second surgery to remove the distractors from his jaw after his jaw healed.  In December of 2019, he had another sleep study done and he passed. The tech who helped was so happy to see George and how he has grown and how far he had come and 2 years later George is doing great.

George is an adventurous two-year-old.  He is always trying to keep up with his two older brothers.  He loves being outdoors playing in the mud and dirt, going for bike rides on his tricycle, and climbing on playgrounds. George is non-verbal but is in speech therapy. We are super proud of all that George has accomplished. He continues to amaze us. He is such a warrior for all he has overcome.

My advice to any parents raising a child or children with 22q is to stay strong. There is always going to be good days and rough days.  Reach out for help from doctors and other parents.  Always love your 22qtie and be their biggest cheerleader.

Thank you so much for having George as your 22qtie of the month