Mott heart patient fills big role on TV show
On his first day at North Star Reach, a camp for children with serious health challenges, Dominic Weber shared his story about being born with a congenital heart condition. Then the 15-year-old listened as other campers detailed their own struggles.
The campers’ bond grew through a week of bonfires, swimming and water balloon fights.
Dominic also enjoyed a special experience that will benefit both his peers and future generations: building a $200,000 treehouse for the camp.
The teen appeared on a recent episode of the DIY Network show The Treehouse Guys, where he served as the “kid client” guiding designers of a creative yet accessible treehouse on the North Star Reach grounds.
Producers reached out to Dominic’s family last year asking if he could offer a camper’s perspective to help guide the creative process.
“We talked about the treehouse looking like kids built it and be something even kids with the most extreme disabilities could use,” said Dominic, who underwent open heart surgery as a baby at U-M’s C.S. Mott Children’s Hospital.
“Some of my friends at camp are in wheelchairs and have never been in a treehouse,” he added. “One of the biggest things was making sure they would be able to enjoy it, too.”
The episode first aired June 18, but it will run again at 11 a.m. Eastern time on Thursday, Aug. 10 and Thursday, Sept. 14.
A strong foundation
The project was a team effort on many fronts.
The treehouse was funded by a donation from Dance Marathon at U-M. The Treehouse Guys hosts James “B’fer” Roth, an Ann Arbor native, and Chris “Ka-V” Haake and their crew traveled to Pinckney, Michigan, last year to build the treehouse. The pair travels nationwide to create custom treehouses for families, communities and nature lovers.
For North Star Reach, the team constructed a handicapped-accessible “treetop retreat” overlooking Woodburn Lake, surrounded by an 1,800-square-foot deck and two ramps leading to the trail. A slower-moving zip line, called a zap line, could be added in the future.
Reclaimed skis, snowboards and license plates serve as decor; old car parts were used to make windows and doorways.
“They did a great job. It will be another place for kids to hang out and just be kids while at camp,” said Dominic, who spent three days with the crew. “I’m glad I could be a part of it.”
The teenager, who this fall will begin his sophomore year at International Academy in White Lake, Michigan, was born with a condition called Tetralogy of Fallot — a defect marked by four heart problems, including a hole between the lower chambers of the heart and an obstruction from the heart to the lungs.
The disease recently made news after late night talk show host Jimmy Kimmel’s son was diagnosed with it.
Dominic’s parents were told about their unborn child’s condition during a routine 19-week pregnancy ultrasound.
Fortunately, the family learned that Mott had a top-ranked congenital heart center and birthing center — which meant his mother could deliver in the same place where her son would be treated.
“We did our homework and were 100 percent confident Mott was the right place to be for what Dominic needed,” said his mom, Patti. “The doctors laid out their plan with such confidence we just knew we were in really good hands and could completely trust we would get the best care.”
A team led by pediatric heart surgeon Richard Ohye, M.D., performed open heart surgery to repair part of the defect just three days after Dominic’s birth in 2002. The family spent three weeks at Mott during his recovery.
Kimmel’s emotional monologue about his son earlier this year triggered familiar emotions in Patti.
“You understand that fear and feeling that you would do anything for your child,” she said. “And when he was thanking everyone, that’s what we felt like. You think of those doctors and surgeons and nurses as rock stars in your world. They are miracle workers. They save babies every day, but when it’s your kid you can’t thank them enough.
“You have overwhelming gratitude.”
Today, aside from the zipper scar on his chest visible while swimming, no one would know Dominic ever had a heart issue.
He’s still missing a pulmonary valve, which means his heart has to work a bit harder, but that hasn’t stopped the teenager from camping, downhill skiing, wakeboard surfing, playing baseball or playing saxophone in the marching band.
Dominic said he is grateful for his health, especially after hearing about what other children at camp have faced.
“A lot of things went wrong with my health, but a lot of things went right,” he said. “I’ve met kids at camp who have had several procedures, are taking a lot of medication or need pacemakers. I count myself as lucky to not have to go through that.”
Dominic has attended North Star Reach since it opened in 2016. He had spent the prior two summers at Victory Junction, a North Carolina camp for kids with serious medical matters.
His experience there was so special that on his 13th birthday, Dominic asked friends to donate gift cards or office supplies to North Star Reach (a project still in development at the time) in lieu of gifts.
Since then, the Michigan camp has already become a place of memories — with more to be made in the new treehouse.
“At camp, you’re around kids who have gone through similar things and you can share that and talk about it,” Dominic said. “But then after that we are just like other kids who have fun doing camp things. The treehouse will be something new everyone can experience together.”
For more stories like this one, check out the Michigan Health Blog.