Living with VEDS: 24-Year-Old Aaron Kennedy’s “New Normal”
LITTLEFORK, Minn. — At 24 years old, Aaron Kennedy is adjusting to life with a rare genetic disorder he never saw coming — one discovered only after four emergency surgeries this year.
“December 31st to January 1st, our world was turned upside down, literally,” said Quen Kennedy, Aaron’s dad. “And it’s just a new normal,” added his mom, Kristi.
A new normal. That’s the reality for 24-year-old Aaron Kennedy and his family. “Basically, I went for a ride in the ambulance and I woke up — different,” said Aaron.
Aaron was hospitalized on New Year’s Day after experiencing severe stomach pain at work. Doctors discovered a serious infection, and a portion of his colon had to be removed. He’s since undergone multiple surgeries and continues to recover.
“I’m still healing. I still have a few cuts and bruises and gashes,” Aaron explained.
The name for what Aaron is facing — Vascular Ehlers-Danlos Syndrome. It’s rare. It’s genetic. And it can be life-threatening.
“There’s less than 200 people in the state of Minnesota with it,” said Quen. “All of your blood vessels and veins are weakened — your hollow organs, intestines, stuff like that,” Aaron added.
Think of it like this: your body’s connective tissue is the material that holds us together. For most of us, it’s strong. But for someone with VEDS, it’s fragile — easily torn and dangerously delicate.
In the midst of healing, Aaron’s days have taken on a new rhythm. “I wake up, sleep in a little bit, take some medicine, do a few things, eat a bowl of cereal. I don’t go downstairs, but not a whole lot. Just hurry up and wait to heal.”
Another part of his current routine — regular doctor visits and check-ins. Living in the small, rural community of Littlefork, Aaron must travel for medical care. “We don’t have the ability to have everything around. We’ve got to drive down to Virginia or down to Duluth to find somebody that knows something about this,” said Aaron.
For his family, the emotional and financial toll has been heavy — but local support has been just as powerful. “The community has been wonderful in helping out, and I know Aaron gets pretty overwhelmed when he gets cards and reads things that people put when Quen posts things on Facebook, updating people. It’s a great community to live in,” said his mom, Kristi.
His parents have also found comfort in new places. “One of the Facebook pages that Kristi and I both joined — I don’t believe Aaron’s even joined yet — is a caregivers support group,” Quen explained.
As for Aaron, his mindset is simple. “I think about the positive. Like, okay, I’m stuck at the house all day, it’s raining, I can’t do a whole lot. Well, maybe tomorrow it’ll be sunny. I’ll go out there then.” Kristi added, “He’s a lot stronger than he thinks he is.”
VEDS is rare, and there’s no cure, but for Aaron and his family, every day is about moving forward. His parents have also been tested and are now waiting on their results.
A benefit for Aaron Kennedy will be held Saturday, April 26th, from 2 to 7 p.m. at the Littlefork Community Building. Donations can also be sent via Venmo to Kristi-Kennedy-43. Proceeds will help cover medical and travel expenses.
