COLUMBIA COUNTY, Wis. — A big blessing this Easter season for one Wisconsin family with three brothers who have coped with a debilitating medical condition.
“You are caring for 3 kids, it’s draining you know,” Kelly Fitzpatrick said while she helped Infinity Infusion Nurse Pete Rankin deliver an FDA approved wonder drug to her three sons, 11-year-old Connor, 9-year-old Kian and 7-year-old Finnegan McVey.
“It’s very satisfying to be able to help out,” Rankin said about why he enjoyed administering the weekly FDA approved two-hour long gene therapy cocktail he creates.
Meanwhile, the single mom has somehow handled the unthinkable; she showed a picture of when her boys were first diagnosed with Duchenne Muscular Dystrophy in 2016 and sighed.
Fitzpatrick’s boys were found to carry the genetic disease not at birth, but as little boys. Duchenne MD will now leave them with lifelong mobility issues and, likely, a much shorter life expectancy.
“I mean, initially, it’s like, oh my gosh, this is a death sentence. This is awful. But in a weird way, it’s like it makes you be present,” Fitzpatrick said while helping her son Connor into his wheelchair.
She said she feared even with the special infusion, all three might one day need a wheelchair, and her older model SUV would not cut it. So she reached out to her community and to the Jett Foundation, a non-profit, helping families with the disease.
“I’m glad that people convinced me that I do need help. I hope we’re gonna live a long life and we don’t know that we don’t know the timeline, but now we’re ready for everything,” Fitzpatrick said.
“It’s got all the bells and whistles, too,” Fitzpatrick beamed as she showed off some of the features of the $85,000 custom accessibility van.
“The point [of the Jet Foundation] is to help people that have the biggest need. We can have other equipment. We can bring Connor’s chair and not have to worry about what might be available,” Fitzpatrick said. “It’s not a reason to stop living you life. We can still do things.”
Even simple things, like loading up everyone for a quick spring break trek to McDonalds for the van’s first drive-thru meal. Fitzpatrick chuckled in the line and said a lot of folks think she is an Amazon delivery driver because of the look of the navy van.
“People think I have a package and it’s been funny to say you know, ‘No I’m just a mom… I’m not with Amazon!’” she said.
She said many people ask her about why she is driving a “delivery” van, but she said she welcomes the questions and said bringing awareness to the rare disease was important.
Also, she said she was so grateful for the gift she could never afford on her own. She believed it was a reminder to keep fighting the disease and believe in hope and the continued success of her sons’ infusions.
“It might be even more reason to live life to the fullest,” Fitzpatrick said.
If you’d like to learn more about the Jett Foundation, click here.