North Ogden family frustrated with repeat denials of specialized wheelchair
Dec 13, 2024, 7:34 PM | Updated: 7:38 pm
NORTH OGDEN — Ryan Berube is likely lucky to be alive today as his rare degenerative disease was expected to take his life about 20 to 25 years ago.
“We’re just lucky to have him,” Ryan’s wife, Amanda Berube, said. “He’s got such a happy disposition. He loves working. He loves traveling. He loves being with his family.”
Ryan Berube was diagnosed at a very young age with Duchenne Muscular Dystrophy. The disease slowly breaks down all muscles in the body, including organs.
He currently has a ventilator tube that helps him inhale enough air to exhale properly. He also uses a feeding tube for most of his meals. In addition to those issues, Ryan and Amanda said that his current specialized chair is not keeping up with his needs.
“A new chair would make all the difference,” Amanda Berube said. “I just don’t understand how he can’t get what he needs to just function.”
Ryan Berube using his chair to move around his home. (KSL TV)
Ryan Berube’s muscular dystrophy specialist at University Health agrees.
In an open letter to UnitedHealthcare, Dr. Russell J. Butterfield wrote, “The proposed chair meets the basic standard of care for non-ambulatory patients with DMD, and anything less will negatively affect his health.”
Ryan Berube said he has developed scoliosis over the years and endures discomfort and pain from sores.
“Anyone who knows about pressure sores, knows that they can actually be fatal,” he said. “That’s a big worry.”
The Berubes said the chair proposed by his doctor and a seating specialist would be molded to support his back and legs better. It would also help keep his arm from falling off the controller, which has happened several times, leaving him stranded.
Ryan and Amanda Berube speaking about the experience of being denied by United Healthcare. (KSL TV)
Two denial letters from UHC state that the chair must be at least five years old and be unable to be repaired before it can be replaced. Butterfield’s letter, however, states that the chair has already met those thresholds.
KSL TV reached out to UHC representatives Friday, who said they will investigate Ryan Berube’s case. If all else fails, Amanda Berube said they will still need the chair.
“If it really comes down to it, I guess we’ll finance a $50,000 chair,” she said. “I don’t know how we’ll do that, but I’m not going to just let him lay in bed and spend the rest of his life there.”
