Our story is a bit unique because me and my son both have 22q11 deletion syndrome. I, however, did not know until after my son was born. I grew up having some special needs, mostly my speech problem, which I had surgery for at 4.5 years old. I had velo pharyngeal insufficiency. I also have always had trouble with fine motor skills and some gross motor skills. I only had a heart murmur though, but was always sick and no one put it together. A few years ago, I had my son Jackson. Immediately, we knew something was wrong because he was born with dark purple hands and feet. The next day, the lactation specialist saved his life by putting him in NICU. A week later, he had emergency open heart surgery. He has also had tubes put in his ears this past summer to help with his speech. His main problems have been developmental delays, as he is catching up pretty well. His speech is further behind than others his age, but it is doing well. He has about 300 words in the past 7 months. He is in special ed preschool and loves his friends. He also love educational cartoons and reading stories and playing with his dogs. I myself have outgrown most of my symptoms, though I still have fine motor skill problems and I am a full time college student.
Written by: Erin Gibbons, Jackson’s Mom