Dan and Jessie Starken with their children, Mitchell and Garrett, and their dog, Zoey. Photo: Chris Emeott
Custom One Charities takes on a home project for the Starken family.
For the first several years of their son Mitchell’s life, Dan and Jessie Starken lived in the horrible limbo every parent fears: Knowing your child is unwell but unable to find any real answers or diagnosis. Mitchell, who’s now 5, seemed typically healthy at birth. But the night they brought him home from the hospital, he had trouble breathing, which brought him to the emergency room and a months-long stay in the NICU. Doctors thought he might have a lung condition.
Months—and years—of testing followed. “He ended up having a brain MRI, and that’s when they discovered the brain bleed,” says Jessie Starken. Mitchell had a stroke in utero. “He started having seizures at 6 months, but the epilepsy genetic panel was negative,” Starken says. “When he was around 3, I started pushing for genetic testing.”
Finally, they had some answers. Ultimately, the genetic tests showed that Mitchell had Gould syndrome, which is usually characterized by weak blood vessels and a host of other conditions: muscle myopathy, kidney abnormalities, cerebral palsy, seizures and more. “There are only 200 people with Gould syndrome in the world,” Starken says. “It’s so rare. You can have a varying spectrum of outcomes, and each patient presents different.”
Mitchell Starken. Photo: Chris Emeott
Wonderful Woodbury
Even before Mitchell’s official diagnosis, the Starken family knew that his needs would affect every part of their daily life, including the way they used their home. “We looked into building a new house that we could design, maybe a rambler style, that was more accessible,” Starken says. But they’d lived in their Woodbury home since 2017. “We loved our neighborhood and neighbors,” she says. The Starkens’ older son, Garrett—now 8—had taken on his big-brother role with grace and aplomb. “He’s so patient and understanding and helpful,” Starken says. “He’s so creative in ways to engage Mitchell, even though Mitchell has limited control of his limbs and is nonverbal. He really incorporates him in play. If friends are over and they’re doing sword fights, he puts a sword in Mitchell’s hand, so he can participate.”
The Starkens decided to do their best to make their current house work for Mitchell and for the rest of the family. “Dan reached out to some local builders to find out how much an elevator would cost and how it would work,” Starken says. It would be expensive, and the red tape of getting funding through the county or state was formidable. “We decided to go rogue and figure this out ourselves,” she says.
Enter Custom One
The Starkens had reached out to Woodbury-based Custom One Homes to get the ball rolling on their home renovations. They wanted to start with an elevator, which would allow them to get Mitchell—and his equipment—safely from one floor to another, especially as he grows and becomes too heavy for an adult to carry him up the stairs. “It’s going to allow us to use our whole house,” Starken says. “Right now, he’s restricted to the main floor. He has a stander and a gait trainer, and those are heavy—we can’t move them anywhere else.” The family also looked into other modifications for their home, like making flooring transitions and thresholds seamless, so Mitchell’s wheelchair doesn’t run over bumps, or widening doorways, so his chair and equipment can comfortably fit.
“They came to us and said, ‘This is what we need,’” says Custom One marketing specialist Kate Hamilton. “They fully expected to pay for it all on their own.” But the Custom One team had a different idea. “It made sense for us to partner with them,” Hamilton says. They made the Starken family beneficiaries of Custom One Charities, which gives back to good causes all over the Woodbury community and beyond. While Custom One Charities donated a portion of funds needed for the project, the Starken family did cover 50 percent of the funds.*
“Every year, they do something for a family, and they wanted that to be our family this year,” Starken says. “We were shocked and really humbled.”
Custom One set up a GoFundMe fundraiser as a way to let eager Woodbury neighbors help support the project. At the time of writing, the campaign has raised more than $20,000. (Find more information on the Starken family’s GoFundMe at gofundme.com/f/thestarkenfamily.)*
Photo: Kate Hamilton
Meaningful Modifications
The renovated spaces in the Starkens’ home will have endless practical implications for the family and the team of therapists and caregivers, who spend time with Mitchell. “It’s important to us that he can experience life as much as possible,” Starken says. “We’re excited to be able to include him in every part of our house and also have a dedicated spot for therapy.” Before the project, medical and therapy equipment was scattered all over the home’s main level. “We had to set up a changing table on the dining room table,” Starken says. “We want to be able to feel like our house is a home again, instead of a hospital.”
“We took some time to really understand what the family needed,” Hamilton says. “We asked a lot of questions about Mitchell and about Garrett.” The Custom One team noted Garrett’s love of baseball and made both brothers custom baseball jerseys for the project’s ceremonial groundbreaking.
Photo: Starken Family. Mitchell and Garrett Starken
The centerpiece of the renovation—the elevator—means the Starkens will always be able to help Mitchell get from one floor to another, along with the heavy pieces of equipment he uses almost every day. “It’s almost like building a three-story closet,” Hamilton says. The project team consulted with elevator experts to ensure that it will still run even if the home loses power. “When you have someone with a medical issue, there is no backup plan with stairs,” she says. “We thought about the worst-case scenarios.”
The family is also replacing much of the home’s flooring, so transition strips won’t interfere with Mitchell’s wheels. They’re widening doorways to accommodate his wheelchair. They’re installing new trim and a special ceiling track in Mitchell’s bedroom for his lift system, which helps his parents and caregivers move him to and from his bed. “Mitchell is super social. He loves to be around everyone and included in whatever we do,” Starken says.
The project, slated to be complete later this year, will allow Mitchell to participate fully in the family’s life—in any room he wants.
As of November 28, 2023, the Starken family says the elevator is complete and is life-changing for the family, as Mitchell now has access to all levels of the house.
Party with a Purpose
Custom One Charities hosts its annual gala, The Mix, on February 17 in St. Paul. Guests enjoy music, dancing, food and a chance to raise funds for the charity’s annual projects, including for families like the Starkens.
5:30 p.m.–midnight February 17, 2024. A’bulae, 225 Sixth St. E., St. Paul
Find more information and registration at customonecharities.com.
Custom One Homes
5097 Woodlane Alcove; 651.372.2158
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*November 28, 2023: An earlier version of this story stated that the remaining funds were to be covered. However, the Starken family has covered 50 percent of the funds for the renovation and the GoFundMe is still raising funds for the project.
