Mount Prospect woman with rare disorder pins hopes on surgery abroad
Katie Kenoe, a pediatric nurse from Mount Prospect, has been largely bed-bound for two years with a rare genetic condition called Ehlers-Danlos syndromes.
She’s hoping a highly specialized spinal fusion in Barcelona, Spain, could partially restore her ability to walk, and she’s reaching out for help through a GoFundMe campaign. Hundreds globally have successfully undergone the procedure.
EDS refers to a group of 13 disorders caused by genetic mutations that affect connective tissue, the material that links, cushions and protects various parts of the body.
The disorders often result in joint hypermobility, skin that becomes extra loose and tissue fragility, with severity and specific features varying widely depending on the type, according to the Ehlers-Danlos Society.
“Connective tissue is everywhere,” Katie said. “It’s in every system in the body, from your heart to your eyes to your skin to ligaments, to joints, your GI system. It’s like Jenga.
“Your body can handle a certain amount of stress for so many years, and then environmental factors, a virus, or an accident is kind of like your last straw.”
Her husband, Mitch, said she experienced “whispers” of trouble throughout her life — difficulty standing for long periods, unexplained pain, and illnesses that once left her attending school only part time. Each decade brought new symptoms. Two years ago, a sinus infection triggered a cascade of neurological problems, and within six months the mother of three was largely confined to her bed.
Today, she can walk to the bathroom and, on good days, to her backyard. She can sit upright for perhaps two hours, spread across the day. She has not been able to work as a nurse for about a year and a half. The inherited condition also affects a son and a daughter.
There are additional surgical options in the U.S., Mitch said, but “significant logistical, insurance and health-related hurdles made them difficult for Katie’s care. When Katie’s care team pursued additional local surgical evaluations, they encountered challenges related to imaging requirements, differing surgical approaches and insurance limitations often faced by complex EDS patients.”
The proposed solution is a craniocervical fusion involving several neck vertebrae, with the possibility of extending to vertebrae below her shoulders. It will be performed by Dr. Vicenç Gilete at Hospital Teknon in Barcelona.
Katie and Mitch expect to remain abroad for about two months, including 10 days in the ICU and an extended recovery period.
The GoFundMe campaign is seeking $170,000 to help cover the surgery as well as flights, care for the children at home and costs associated with Mitch working remotely while abroad. The family also faces ongoing out-of-pocket expenses for specialist care, medical devices not covered by insurance and compounded prescription medications.
Katie plans to advocate for the many patients left behind, unable to obtain disability and receive specialized EDS care.
“We’ve been blessed by the community supporting us through this amazingly difficult time,” she said of a meal train organized through St. Paul Lutheran Church in Mount Prospect, where two of the family’s three children attend school. “It’s the most incredible thing I’ve experienced.”
Jen Andersen, a mobile physical therapist who operates Aspire Physical Therapy and sees patients in the Northwest suburbs, visits Katie at home regularly. These sessions are intended to help increase muscle strength and firm up her joints.
On more difficult days, Andersen said, “It may be me stabilizing her neck until the tremors in her legs stop.”
Andersen said the surgeon’s expectation is for Katie to be able to walk household distances again — possibly a block or two — after surgery and extensive rehabilitation that could last a year to a year and a half.
Katie’s short-term goal is more modest.
“I just want to sit up at the dinner table with my family,” she said.
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