The Jacoby Family

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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 11 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.

 

 

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The Pietrini Family

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Told by Katy Pietrini (Mom)

To parents who are hesitant, my advice is: take a deep breath, give your child a confident hug, and trust the team at Jill’s House. They are compassionate, capable, and know exactly how to make kids—and parents—feel safe and welcome. When you arrive to head home, expect to pick up a glowing, proud child, who is already begging to return.

Our family is big, active, and social—exactly how we like it. There are five of us: my husband Joe and me, our daughter Gianna, and our twin boys, Vinny and Carmine. On summer evenings, we often cuddle in the backyard, with family and friends over for movie nights. We’re also huge soccer fans (Arsenal fans through and through), passionately following every match. We love being outdoors, soaking up the sun with good company.

Gianna, our oldest, is starting her freshman year at Indiana University. She’s got this huge smile and an old soul—always looking out for her brothers. Vinny, one of our twins, lives completely in the moment. His twin, Carmine, is the opposite; he wants to know exactly what’s happening for the next 12 months, down to the day. The contrast keeps life interesting, and they’re best friends despite their differences.

Carmine was born healthy, but at just three months old, he became a “miracle child” at Children’s Hospital. At age two, he was diagnosed with cerebral palsy. This began a journey of therapy, adjustments, and finding spaces where he could thrive.

We heard about Jill’s House through friends and loved the idea of Carmine being able to go away for a weekend, have fun, and be safe. He’s been going to Jill’s House Weekend Adventures for six years now, since he was 10. What Joe and I value most are the incredible opportunities Carmine gets at Jill’s House.  It’s not just about the respite for us as parents (though that’s definitely appreciated!); it’s about watching Carmine thrive.

From his very first weekend, Carmine dove right in—with no hesitation. As soon as we pulled into the lot, we were greeted warmly by the camp directors and counselors, who helped him get settled. Before we knew it, he was off. That made it so much easier on us, because we’ve always tried to follow his lead when it comes to new experiences.

When we picked him up after that first stay, he was full of stories—boating adventures, singing in the lodge, a huge bouncy house, and the hilarity of his bunkmate talking in his sleep. What struck us most was the change in him, like he’d grown up in just two days. He came home and started doing little things independently, like pouring his own cereal. That confidence—rooted in proving to himself that he can handle new situations—has only deepened over the years.

Every trip brings something new. Ask Carmine what his favorite activities are and he’ll shout: “THE TALENT SHOWS! SINGING TAYLOR SWIFT SONGS! THE GIANT SWING!” He always loves seeing friends and counselors (especially Zach and Ava).

For us, the weekends when Carmine is away are both respite and a gift of opportunity. Two nights of sleepovers might sound simple, but for families like ours, it’s priceless. Knowing he’s somewhere safe, understood, and completely himself gives us peace of mind. It also lets us spend uninterrupted time with Gianna and Vinny, go out with friends or just breathe for a moment.

To parents who are hesitant, my advice is this: Take a deep breath, give your child a confident hug, and trust the team at Jill’s House. They are compassionate, capable, and know exactly how to make kids—and parents—feel safe and welcome. When you arrive to head home, expect to pick up a glowing, proud child, who is already begging to return.

Jill’s House isn’t just a weekend away. It’s a place where Carmine gains independence, discovers new abilities, and comes home more confident every single time. As parents, we get to recharge while knowing he’s having the time of his life. It’s a win-win that feels almost too good to be true, but Jill’s House makes it happen.

The Damm Family

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As told by Nadia and Joe Damm

 

Jill’s House is a gift from God. We can’t believe we get to enjoy it multiple weekends a year! We are so grateful that this is something our family can benefit from for years to come. Thank you, Jill’s House!

Before we had our children, we befriended a woman who has since become Alyssa’s volunteer Buddy at Windy City camp. This dear woman would share her experiences as a camp volunteer, and it always amazed us that people like her were willing to give up their weekends in that way! It was by God’s grace that this sweet woman entered our lives almost 16 years ago.

We have had a variety of experiences raising a daughter with Down syndrome. From doctors who didn’t see the value of life and encouraged us to terminate the pregnancy to inconsistent and challenging respite services, at times, it seemed as if the world did not want Alyssa here. At least, that’s how we felt. But we have also encountered many people who genuinely love our daughter, and Jill’s House offers that to our family!

Alyssa’s siblings have enjoyed going to camp for years, and Alyssa began asking for the same experience. We kept hearing about Jill’s House from our friend who volunteers there, and since Alyssa, at nine years old, seemed to be at the right age, we decided she was ready to go.

Though the intake process took a while, it was extremely comforting and helped in building our trust. Indeed, an immense amount of trust was required to place our child in someone else’s care. All the questions we were asked made us feel like they understood our daughter, and nothing excluded her from participating in camp. Through the whole process, I gained a new perspective on our lives and what we work through day to day with Alyssa. Although we felt reluctant about entrusting her to someone else, aware of what goes into caring for our child, every detail about Alyssa was taken into thoughtful consideration by Jill’s House, and they were excited to have her at camp.

Alyssa is adventurous and outgoing. During our Meet and Greet before her camp weekend, she toured the grounds, saw where she would sleep, explored the activity spaces, and enjoyed the outdoor activities. She was excited for camp and raring to go!

When her first Jill’s House weekend arrived, the whole family dropped Alyssa off at camp. Her brother and sister really wanted to see where Alyssa would be staying. We also decided to stay near the camp that weekend. We relaxed, lingered, and just talked. We gave one another time to share. We couldn’t believe how much we all relaxed and bonded. The weekend was amazing! Our older kids kept saying how much they needed it!

Alyssa had a fantastic time at camp, too. While she is outgoing, she still feels her way through every situation. We were so happy to learn that she enjoyed playing with her Buddy and our good friend the whole weekend! She picked up on cues that everyone there was happy to have her, and she felt safe. She was given choices, and she thrived!

At the end of the weekend, we were all so excited to be together again! Alyssa came home wanting to say grace at mealtime and share the devotionals and prayers they said at camp. We all felt refreshed and renewed; it was just the right amount to reset.

The Knowlton Family

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Meet Margot and Family

“To describe Margot in one word it would be, tenacious! She is a great friend, and a strong advocate for kids with special needs. She is sensitive to the needs of others and has such a great spirit! Margot was born with Down Syndrome and has always had to work extra hard to do simple things. But she is wonderfully tenacious.”

“Margot considers herself to be an average 15-year-old high schooler and she has a good group of friends. She has an older brother who will be going off to college in the fall, and a 4-year-old brother we adopted after fostering him when he was a baby. We know Margot sometimes feels left out, being a girl with special needs in the middle of her brothers, but she truly loves her family.”

“As a toddler we received in-home therapy support and the therapists would often come to the home with their bags of toys and treats. Margot quickly learned that bags were like a treasure chest! You never know what is inside. If we were at the beach or with other friends, she would often go through bags hoping to find something fun. She had such a light even as young toddler that her inquisitiveness wasn’t a bother! She has always been very curious of people”

“Now that Margot is 15 years old her curiosity has turned into compassion. Margot was crowned Miss Illinois Amazing Junior Teen and she will be going to Nationals in July. This is an advocacy event that empowers young women with special needs to speak up for themselves, to gain confidence, and to inspire others. Margot wants to be a writer when she grows up and has been doing a lot of writing. She also volunteers, does charity events, and advocacy work for kids with disabilities. We are so proud of her!”

“Margot has a great friend group of kids who have special needs and some who do not. Margot would say that she and her friend group are ‘Really cool!’ . They do typical teenage things like go to the movie theater, go to McDonald’s, or hang out at each other’s home. Though she has great time with her friends and her family, we also know that she needs something special and just for her. Margot’s special place is Jill’s House Windy City Camp!”

“We were so happy to learn about Jill’s House around 4 years ago. A friend of ours shared that she was working at the Windy City Camp. I had no idea this camp existed! We connected with the camp staff and immediately enrolled her.”

“Now that Margot has been going to camp for several years, she has developed some favorite things about camp. For starters, Margot considers herself a foodie and says the food is really good! She also loves having a camp buddy. But hands down, her most favorite thing about camp is the Talent Show. Margot will carefully prepare for the Talent Show. She plans what she will do and what props she will bring. She will sometimes dance or sing along to a favorite song.

“Camp has been so great for Margot! She knows a few of the girls who attend camp regularly, and she loves being able to spend time with other kids who have different special needs than herself. In our family with an older brother and a younger brother, camp is Margot’s special place where she gets her special attention. While Margot is at camp, we spend one on one time with our other kids. We are relaxed because we know that Margot is cared for. The nurses really show love and care for Margot, and that means so much to us. When we pick up Margot from camp, she chatters about her camp experiences for the first few minutes of the 90-minute car ride home. She will sing her favorite camp song, “Father’s House” and share about the talent show. But camp is also exhausting! It never takes long before she is fast asleep.”

“We are so grateful for Jill’s House and the Windy City Camp and providing Margot a place to be herself and feel special.”

Thank you for making stories like Margot’s possible.

The Smith Family

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January 29  |  3 minute read

“Jessica and I are missionary kids from Southeast Asia and high school sweethearts! After getting married, we spent some time in Alaska—in fact, on our first Sunday at our church there, we announced that Jessica was pregnant! We had lost our firstborn shortly after she was born, so we were very excited about this next pregnancy. Lo and behold, our son Trevor came two weeks early that summer. 24 hours after he was born, he started turning blue, so we were medevaced off the island to a children’s hospital in Seattle. A few days later the doctors found out Trevor had Down syndrome, which was a complete shock to us. No one in our extended family was familiar with Down Syndrome in any way—so not only were we surprised, but we were also unequipped and very much alone.”

“Trevor has transformed our life in many ways and has given us a passion for the special needs community. A door opened when we heard whisperings about the Jill’s House Windy City camp. When we found out that was an option, we pursued it, hard. Once it opened, we were at the very first Windy City Camp weekend and have been at almost every camp since!

Respite opportunities are very hard to find—especially in Illinois. There is very little funding for it, especially in Illinois. Children who have special needs carry their own challenges, so that certainly impacts the options for someone to provide respite care. There is no other organization we know of that facilitates nights away like Jill’s House does. Jill’s House is tackling and pioneering a very challenging task, and for that we are very grateful.”

“It is a bigger ask to request family to stay with Trevor overnight and he doesn’t have friends that he goes to have sleepovers with. Knowing that we could send him away for a whole weekend, that he would have a total blast, and that we could do something together or take our other kids on special adventures was HUGE. It really is something that he looks forward to in a big way—he is such a huge fan of Jill’s House, and it is a very special privilege to have something so cool that he really loves. He has a great time, every time.

Trevor is very unique—I don’t think we’ve ever met a child with Down syndrome like Trevor. He is very high-functioning, very verbal, very involved in all parts of life, and is very athletic (he loves doing high intensity workouts!). Trevor loves to play his drums, he is deeply loyal to his high school (he is super proud to be a Tiger!), and absolutely loves movies. In fact, at Windy City Camp he will organize the entire Jill’s House staff into all the parts and characters of movies, and then they reenact the entire film, wearing costumes, as Trevor narrates!”

“Besides running camp like he is the prince there; Trevor tells us that his favorite things about camp are ‘his buddy and the s’mores’. The buddy he is paired with each weekend becomes his new best friend for life!

We had a nearly year-long break during the pandemic, but once Camp Windy City opened back up, Trevor was able to go again! He verbally expressed several times how much he missed Windy City Camp during that time.

Another thing that we are so grateful for about Windy City Camp is the staff: they are just fantastic to interact with. They are enthusiastic and professional and joyful all at once. The paperwork they do is proof that they are tracking Trevor so closely: an indicator of how intentional the staff try to be. Jill’s House does everything they can to make each weekend a special weekend.

At home, there is pressure on our other kids to include him, or on me to entertain him. While he is having his own weekend adventure at Windy City, we can all relax. We don’t have the added level of “Well, what’s Trevor going to do? How is he going to engage?” We miss him when he’s gone, we are always ready to have him back, and we love hearing about his fun times at camp, but it is very lovely to just have that brief time of relief from the ongoing stress and tension we feel each day.”

“Churches are often looking to bless families like ours. They have big hearts, they are well-intentioned, but the ways they are typically able to help is not what we truly need at the core. They will do a big Saturday morning activity or show a movie for families affected by disability. But that limited time is not true respite. What our family really needs is a weekend off. That is too hard for a church to pull off without the help of a place like Jill’s House.

That being said, Trevor has gone to a full week-long camp before. He had the time of his life, but he was out of his routine, and we ended up doing damage control at the end of it. For that reason, a weekend is a very reasonable amount of time to entrust others to care for Trevor. Jill’s House is not long enough that things will get overlooked, but long enough that we all get that true respite: Windy City Camp is the perfect amount of time for Trevor and for us.

Unless you have a child with special needs and live the day-to-day underlying stress that that places on a family, and then feel the relief when that is taken away temporarily, I think it would be hard to understand exactly how amazing Jill’s House is for a family like ours. All we can say is a huge thank you to you for making this opportunity possible and accessible for us and for Trevor.”