The Jacoby Family

Told by Brittany (Mom)

“Jill’s House has become a gift for our entire family. Henry gets an adventure that’s completely his own. Walker gets precious one-on-one time with us. My husband and I have the chance to rest and reconnect. “

If you meet my son Henry, the first thing you’d notice isn’t his diagnosis. You’d notice his smile.

Henry is 12 years old, and he’s a very happy boy. He loves people, loves adventures, and is always ready to go somewhere new. Whether it’s taking the train into downtown Chicago, riding the

water taxi, cheering on his older brother Walker at football and lacrosse tournaments, or simply going for a walk with our golden retriever, Otto, Henry is happiest when he’s out exploring the world.

Henry also has a rare genetic condition called FOXP1 syndrome. From the time he was a baby, we knew his journey would look different. He missed developmental milestones, and by age three, genetic testing gave us a diagnosis. Since then, our lives have been filled with school, therapies, and wonderful teachers and specialists who have helped him grow every step of the way.

Until last summer, though, there was one thing Henry had never done. He had never spent a night away from us. When another mom first told me about Windy City, Jill’s House camp in the greater Chicago area, I thought it sounded incredible. But I honestly couldn’t imagine Henry staying somewhere without us. Still, we decided to visit, met the staff, and eventually took a leap of faith.

I’ll never forget dropping him off for that first weekend at Windy City. As we pulled away, I remember thinking, Are you sure you’ve got him? Driving home, it suddenly hit me: for the first time in 411 years, Henry wasn’t with us.

Of course we missed him. But for the first time in a very long time, our family experienced something we hadn’t realized we needed. We went for walks. We enjoyed dinner together. We didn’t have our usual hour-long bedtime routine. We relaxed.

But what surprised me most wasn’t the respite. It was what Windy City gave Henry.

Walker has football, lacrosse, and friends. Like most teenagers, he has activities that are uniquely his. Henry’s world is different. Much of his life revolves around school, therapy, and home with me and my husband, Matt.

Windy City changed that. For the first time, Henry has something that’s completely his: his camp, his friends, his adventures.

Watching him share a room with other campers, climb the ropes course, ride boats, and simply be part of the group has been incredible. There were so many things he has done at camp that honestly surprised me. Every photo and every update showed me another way he was growing—socially, developmentally, and in confidence.

Henry communicates using a combination of verbal speech and a communication device, so he can’t always tell us everything he experienced at camp. That’s why those photos and updates mean so much. We sit together afterward, look through every picture, and watch his face light up as he relives each adventure.

Now, when another camp weekend is coming, Henry can hardly wait. He talks about it constantly. By the time we pull into camp, he’s so excited that he runs to join the group before I even have a chance to say goodbye.

Jill’s House has become a gift for our entire family. Henry gets an adventure that’s completely his own. Walker gets precious one-on-one time with us. My husband and I have the chance to rest and reconnect.

But more than anything, I’m grateful that Henry gets to do something that’s just plain fun. So much of his life is school and therapy. At the Windy City camp, he gets to make friends, try new things, build independence, and experience the simple joy of being a kid.

If you’re a parent who’s nervous about trying Jill’s House for the first time, I understand. I was too. But you’ll never know what your child is capable of until you give them the opportunity. I can’t overstate how grateful we are. Jill’s House gives our family something we couldn’t find anywhere else: respite for us, and for Henry, a place where he belongs.