Woodbury family raising money for renovation to help son with rare genetic disorder
WOODBURY, Minn. – A Woodbury family is opening their home and hearts to share their story about a rare genetic disorder.
Only about 200 people in the world have Gould syndrome. One of those people is 5-year-old Mitchell Starken.
"He does have a really great smile that just kinds of warms your heart," Mitchell's mother Jessie said.
Those that know Mitchell call his smile a "million-dollar mighty Mitchell smile." A stroke in the womb started a long medical journey for Mitchell and his parents, Jessie and Dan.
"We had a couple hours at home and that was it," Jessie said.
At 6 months old, he was diagnosed with a severe form of cerebral palsy. By age 2, testing revealed he also had Gould syndrome, an ultra-rare genetic disorder impacting just about every aspect of his life.
"Our families are close and so we have a lot of support, but it's really hard," Jessie said.
Mitchell can communicate with his smile and with his eyes, using advanced technology and equipment. He also learning how to navigate a new wheelchair he can steer using head movements.
But the task of going upstairs to his bedroom is only possible if someone carries him.
"It's 35 pounds, but 35 pounds sometimes fighting you versus helping you," his father Dan said.
This challenge is why they decided to install an elevator. They say most caregivers have a weight limit of 50 lbs, and they worry as Mitchell grows, finding help will become difficult.
"It's gonna be life-changing for us, for Mitchell, for other caretakers to be able to keep help in our house. It will be life-changing," Jessie said.
It will allow the family to spend time together in a place other than the first floor, giving Mitchell more independence as he grows.
"We love the neighborhood and our neighbors. We want to stay in this community versus trying to find something else somewhere else," Dan said. "It just makes sense for us to make this work."
Custom One Renovation is offering to match donations up $10,000. Click here to make a donation.
