A Granada Hills family struggling to pay for their son’s medical treatment, including a costly motorized wheelchair, have turned to social media and the Southern California community after repeated denials from their insurance company.
Avery Faeth, 11, was diagnosed with Duchenne Muscular Dystrophy on Feb. 14, 2007, a few months before his third birthday. The degenerative muscle disease has no cure. Boys diagnosed with it typically live into their late teens and early 20s, although the Muscular Dystrophy Association has reported in rare cases, some have lived into their 40s and 50s. Girls rarely develop the disease.
The family’s struggle with DMD and their insurance company is the first installment of KTLA’s Problem Solvers, a new series that hopes to bring Southern California communities together, matching those who need help with those who can help.
“It changed everything the day he was diagnosed: the way that we look at life and the way that we raise our children and knowing that time was not on our side,” said the boy’s mother Lee Ann Faeth.
The Faeths filed a claim with their insurer to cover a C400 VS Junior, a motorized wheelchair for young adults that allows them to stand with the push of a button. Doctors told the family it would enhance and elongate the sixth-grader’s life.
“In March, I began a long battle with United Healthcare and our state-funded DME agency to obtain the powerchair Avery needs. Through two long appeals, which have taken countless hours away from my family and keeps me up at night fighting endlessly for my son, his powerchair has ultimately continued to be denied,” Lee Ann Faeth wrote on a GoFundMe page for her son.
Lee Ann Faeth said that she’s lost faith in the healthcare system.
“By law, the health insurance companies are supposed to provide their patients with what is medically necessary, and they’re shortening his life because they won’t provide him with what is medically necessary,” Lee Ann Faeth told KTLA.
Their insurance claim for the new chair — which would cost the family $40,000 out of pocket — was ultimately denied. In the meantime, Avery has borrowed a similar powerchair without the standing feature from wheelchair maker Permobil. Now the Faeths, a family of four, are working on raising the funds through GoFundMe and Facebook.
It started with Lee Ann Faeth and a friend running a half-marathon to raise money for the fight against DMD. In July, the Faeths partnered with the frozen yogurt chain Menchie’s for a fundraiser. On Nov. 2, they’re scheduled to participate in a “mud run” to support what they’ve now dubbed “Avery’s Alliance,” according their GoFundMe page.
Lee Ann Faeth, who stopped working full time years ago and is now a stay-at-home mother, said this new motorized wheelchair is important for her son’s future.
“The chair will probably do a lot as far as reaching some of the goals that we want him to reach,” said Dr. Leigh Maria Ramos of Children’s Hospital Los Angeles. “It will enhance his life. It will give him more independence. Our boys now — living into adulthood — it will give him the independence that he’s supposed to learn how to acquire when he’s a child.”
A spokesperson for United Healthcare issued the following statement:
“We empathize with the Faeth family’s difficult situation. Based on the terms of the benefit plan and consistent with federal standards, the upgraded wheelchair is not covered. We shared information with the Faeths on how to obtain an independent review of their request.”
Those wishing to help Avery can contact us using this form.
We’re also looking for more stories to share as part of our Problem Solvers series. If you’re being taken advantage of, or overwhelmed with red tape, the KTLA 5 News Problem Solvers want to help. Submit your story for consideration here.
Correction: An earlier version of this story had two quotes improperly attributed. It has been updated.