Knowlton knotes surgeon general5/18/2023 ![]() ![]() Living in DC, we don’t have family around that can help us, and our developmental pediatrician suggested we consider applying to Jill’s House because we don’t have a support system or respite. We just want him to be happy and successful in the world, which is what we want for all our kids! “ “We found out about Jill’s House through our developmental pediatrician. We are far beyond being sad about the life we had envisioned for him. We want him to be the best Henry that he can be and be able to function as best as possible in the world, which is why we try to provide all the supports and therapies we can. ![]() He loves everybody, and that is what we want for him. “Henry is very active and somewhat verbal. There are only about 50 families in the United States with children who have been diagnosed.” ![]() Henry has Christianson Syndrome which is a super rare X-linked chromosomal mutation. After some time, we found a geneticist who would run the genetic screening. Our first geneticist would not run a genetic screening because genetic mutations usually manifest physically and Henry doesn’t present any. “Our pediatrician set us on a road of physical therapy appointments, and specialists, but no one knew what was going on. We realized then that he wasn’t hitting the benchmarks for his age.” When you have multiple children, you see how one is progressing differently than the other. “We knew we were facing something unique when we were at Henry’s 9-month well-baby appointment. Henry is just the happiest kid on the planet!” I don’t know what it’s like to be a sibling of a child with special needs, but both our children do a great job trying to include Henry and being enthusiastic about the games he invents. Henry is in the middle and just loves his brother and sister so much! He wants to be around them all the time. Our daughter, the youngest, is our princess and does all the princess things. Our older son is in middle school and plays travel baseball. Henry is our middle child and just turned 11 years old. “Our family lives in Washington DC and we have 3 children. ![]()
0 Comments
Leave a Reply. |