“Our family lives in Washington DC and we have 3 children. Henry is our middle child and just turned 11 years old. We do all the things that families do. Our older son is in middle school and plays travel baseball. Our daughter, the youngest, is our princess and does all the princess things. Henry is in the middle and just loves his brother and sister so much! He wants to be around them all the time. 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 just the happiest kid on the planet!”

“We knew we were facing something unique when we were at Henry’s 9-month well-baby appointment. When you have multiple children, you see how one is progressing differently than the other. We realized then that he wasn’t hitting the benchmarks for his age.”

“Our pediatrician set us on a road of physical therapy appointments, and specialists, but no one knew what was going on. Our first geneticist would not run a genetic screening because genetic mutations usually manifest physically and Henry doesn’t present any. Henry had no physical traits. After some time, we found a geneticist who would run the genetic screening. Henry has Christianson Syndrome which is a super rare X-linked chromosomal mutation. There are only about 50 families in the United States with children who have been diagnosed.”

“Henry is very active and somewhat verbal. He has words that we understand.

He loves everybody, and that is what we want 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.

We are far beyond being sad about the life we had envisioned for him. 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. 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. Henry needs constant supervision, and we have our other two children, so finding out about Jill’s House was a real blessing.

For Henry to be able to go to Jill’s House, where he’s in a safe and secure environment, where people care about him, and where he can play and have a really good time, is just phenomenal! When we receive notes from his time at Jill’s House, they always talk about him in the bounce house! But we have also learned that he enjoys going to the music room. He likes to dance, but we haven’t known him to want to do things with musical instruments. While he’s at Jill’s House Henry gets to do fun things that aren’t available at our house. Though we know he doesn’t understand everything, we know that when we say Jill’s House, Henry knows exactly what it means.”

“While Henry is at Jill’s House, it also gives us an opportunity to spend time with our other kids and focus on them. Regularly developing families can make decisions on a whim to go for a hike, go to the movie theater, or bowling. Those kinds of activities are hard for us, so when Henry is at Jill’s House, we can do things with our other kids who always see our attention on Henry.”

“When parents are dropping kids off at Jill’s House with bags of medications and instructions, we realize how much we handle each day. We don’t think about it daily, but when we must describe to someone all the things that are particular about Henry, it reminds us that it is a lot of stuff handle every day. To have a place where he can go, be safe and have fun, is a treasure!”

“Our family has participated in some of Jill’s House sponsored activities. We attended an in-person counseling group for parents a while back, and it was so good to sit and be encouraged. It is hard to hear the journey that some have taken but it is also encouraging to know that you’re not alone. Our older son has participated in sibling in-person and virtual events, and our daughter will participate when she is a little older. We are just so happy and blessed to have Jill’s House.”

“There are many worthy causes to support. We would tell anyone thinking about supporting Jill’s House that, for the families that use Jill’s House, it is one of the most important things we have in our lives because of the support it provides us. We are just so grateful!”