MALTA, N.Y. (NEWS10) — A local military family received tough news that their infant daughter has a deteriorating genetic disorder. The baby’s mom says that on top of the diagnosis, they have also learned their insurance company is refusing to pay for a medically prescribed helmet.
Danielle McCann, of Malta, says her 10-month-old daughter Rian began having seizures at 3-months old. A battery of tests revealed a daunting diagnosis, CDKL5. It is a very rare genetic disorder that can steal a child’s ability to walk, talk, and even eat without a feeding tube. The severity varies with each case, so parents never know upfront how debilitating it will be.
The disorder can also cause malformations of the skull resulting in swelling of the brain. Danielle says Rian’s doctors prescribed a special helmet to keep that from happening. But then came even more bad news. This time from their insurance company, Humana Military Tricare, which denied coverage of the helmet.
“We shouldn’t have to put up a fight for something she needs. And I don’t think any parent should do that,” said Danielle.
She says Tricare wants Rian to undergo cranial surgery first to repair any malformations before she is approved for a helmet. But the mom says Rian’s isn’t a candidate for surgery due to her seizures.
She says they will likely have to cover the $3,000 cost out of pocket. As a military family, Tricare is their health insurance company through the Department of Defense.
“My husband serves his country every day and this is how they repay him?”
Through an email, a Tricare spokesperson said HIPAA laws prevent them from providing any details. However, he said they will work with the family to help them navigate their care.