Insurance denies coverage for boy battling rare disease

(KDVR) — Bennett Ryken, 3, plays with little sister Grace in the living room of the Ryken family home, seeming not to have a care in world until the effects of the rare disease he bravely battles turn joy into pain.

The son of West Metro firefighter Nick Ryken and his wife, Carlie, was diagnosed with a rare autoimmune disorder that causes his body to produce an antibody that attacks and scars different parts of his brain.

“You don’t think that’s going to happen to your child, it happens and it’s devastating,” Carlie Ryken said.

Seizures lead to ICU stay for 3-year-old

His father told FOX31 that there are no words to describe how painful it is to see his little boy suffer.

“He’s my little buddy, he’s my best friend,” Nick Ryken said. “He’s our whole world,” Carlie Ryken said.

Bennett spent seven days in the intensive care unit at Children’s Hospital in November after having multiple seizures. He has endured other problems since then.

“He wasn’t able to walk. He just kept falling down. We didn’t know — we had no idea what was going on, and so it was very scary,” Carlie Ryken said.

The disease is also affecting Bennett’s eyesight.

“He got tired, lethargic, started complaining about his eyes hurting,” Nick Ryken said.

Monthly IV infusions can help Bennett, but the couple’s insurance carrier is denying coverage. The infusions cost thousands of dollars per treatment, and several treatments are required.

“We’re paying into this insurance every month, right, and when it comes time for them to help, they refuse to do it,” Carlie Ryken said. The couple has tried to contact the carrier several times.

“It’s the worst time of our lives right now with what we’ve gone through, trying to get someone on the phone to just listen to me,” Carlie Ryken said.

How to help the Ryken family

The Problem Solvers are reaching out to the carrier to investigate the decision and request coverage. Meanwhile, family and friends are launching an effort to provide immediate assistance to Bennett with a GoFundMe page.

All are hoping to provide Bennett with the life he deserves.