Doug and I have two children, Charlotte and Cooper, who are affected by an ultra-rare genetic disorder. They are sweet, fun kids who both need specialized support with all aspects of daily living and have really significant needs, which is exhausting.

Charlotte and Cooper’s disorder is caused by a disruption to their FAM177A1 gene.  The loss of function of this gene has caused intellectual disability, autism, seizures, sleep disturbance, motor issues, congenital cataracts, and more.

We love the Pacific Northwest and have chosen to raised our family here but unfortunately, we don’t have family nearby, so there aren’t a lot of opportunities to get respite or family support—so I am always looking for ways to find rest. When I heard about Jill’s House, I was very interested, and it sounded just amazing. Having a place like Jill’s House to go is great for our kids and great for us. We were one of the first families to try it out in Seattle, and we were really anxious, especially for our little one, Cooper, who is nonverbal. Having met the Local Program Manager, who was so caring and wonderful, we were put at ease. Jill’s House met us right where we were: hearing our concerns and doing what they could to make it feel right for us. Originally, the plan was to drop our kids off at a meeting place, where they would be taken by shuttle bus to camp. We didn’t feel comfortable with that before getting a visual of what camp was like: where they’d be sleeping and eating and playing. So, Jill’s House let us visit camp, and it was so beautiful! After seeing it in person, we felt comfortable leaving the kids for the weekend although we were still newvous.  A few hours after that, we got a text from the Local Program Manager saying “The kids are doing awesome! They’re all smiles!” And she sent us a few pictures, which showed exactly that!

From that point on, our shoulders just dropped, we settled in, and we had an amazing weekend. We picked the kids up on Sunday and they were happy, wonderfully worn out, and had been so well cared for.

Months later, I was at a fundraising event for Jill’s House and shared our story there. A man came up to me after I spoke and said: “I know who you are! I work at camp and was heading out to go home when you arrived for your children’s first visit. My family says our prayers every night at dinner, and I asked the Jill’s House Local Program Manager if there was anything we could be praying for that night when I went back home. She pointed to you and your husband and said: ‘There is a couple who just dropped off two of their kids, and they’re really anxious about it. You can pray for that family.’ And so, I went home, went to the dinner table, and my wife and children and I prayed for those kids and for you.” Now he knows who he was praying for! It came full circle for us.

Once we got that first camp under our belts the questions turned into: “How often can we come?!”

Charlotte and Cooper loved camp from the first stay! Each time they have attended, Doug and I would pick an activity such as playing golf and going skiing—we are an adventurous couple but can’t always carve out the time to do these things. We have really enjoyed our time while the kids are at camp, and we are able to enjoy it because we know the kids are having a blast, too!

Charlotte has limitations in her language, but makes it VERY clear in her own way how much she loves it! She says all the time: “Go Jill’s House! Go Jill’s House!” She has pictures up in her room of her in the canoe with her counselors, and throughout the pandemic has been so eager to get back to them!

Caring for medically complex kids is extremely hard, especially during the pandemic.  And, having two severely impacted children is exponentially challenging. There is never a dull moment. The level of vigilance we must have is very high, as our children have huge safety risks, and don’t understand the danger of a busy road or wandering off. There is a constant need for supervision and care. They need help getting dressed, with eating, with everything. It is tough. It is a lot.

Typically, we have a robust team of people to help us: between Jill’s House, school, therapy, and caregivers, we are kept afloat. Even under the best conditions, it is a lot to coordinate.  When the pandemic began, all the help dried up. There was no school, and then when it became virtual learning, our kids could not access it. In fact, that exasperated things for them. We saw a significant increase in behaviors and seizures in our children, and the days were extremely long. Our kids are very, very dependent on predictable schedules and activities that keep their skills and interests up. During 2020, there was nothing to look forward to with no hope that change and relief would come.

We are grateful that things like school have returned, and cannot wait for Jill’s House Puget Sound Camp to phase from day camp to full overnight, weekend camp! Once that happens, we’ll be a good shape.

We have an older son, Nash, as well. He is 17-years-old and the weekends his siblings have camp are good for him, too!  Our pace of living mellows, the house is calm and quiet, we are all able to get some respite.

Charlotte is 15 years old and is hilarious—she is as silly as they come! She loves dressing up in costumes, she loves when things fall off her counselors’ heads, and she loves jokes. At camp, she sleeping in the cabins and loves animals, especially the horses. She has an amazing memory and will forever remember the really special moments at camp, like seeing a horse sneeze or getting to go in the canoe. Camp really is the perfect fit for her.

Cooper is 10-years-old and is like a little puppy-dog! He is super loving, communicates with his eyes and gestures, stares straight into your soul, and just you get wrapped around his little finger. He loves to stack up blocks and then knock them over, and he is nonstop! He is on the go and into trouble all the time! Camp is also so perfect for him.

The feeling Doug and I get when we drop my children off at Puget Sound Camp is priceless. We know that Charlotte and Cooper are going to be loved. It’s not just a babysitter and it’s not just “good enough”. The staff and volunteers are devoted to our kids and want to make a difference for them. Plus, the team has clearly been transformed by time with kids like ours. They know our kids! The level of care that comes from Jill’s House is exceptional, and I want to say thank you for making it that way! You have given us something we really could not find anywhere else, and for that we are so grateful.