Family of 6-year-old girl with fatal disease seeks help

INDIANAPOLIS (WISH) — Six-year-old Rowan Dingledy was diagnosed with CLN3 Batten disease. There is no known cure for the extremely rare disease. It causes seizures and blindness in children and in some cases, a child may only live into their 20’s.

“It’s a cellular aggregation disease similar to ALS, Alzheimer’s, Parkinson’s, and Huntington’s disease. It’s in that same category of diseases,” Rowan’s dad, Eric said.

Rowan’s parents say their daughter was a happy, and healthy preschooler until they noticed something was wrong.

“We noticed that she began to miss objects out in plain sight with her vision,” Eric said.

At first, doctors thought Rowan was suffering from a form of childhood blindness until a specialist ran some tests on her.

“Rowan’s result did come back and it has a neurological component. At this point, nothing like this was ever on our radar,” Rowan’s mom, Jessica, said.

There are drugs that can help delay some of the symptoms, but Rowan’s insurance won’t cover it.

“Since it’s not specifically FDA approved for CLN3, that is where we are having insurance issues because a lot of insurance policies dictate that it has to be specifically FDA approved for a certain indication,” Jessica Dingledy said.

A month’s supply of the drug could cost anywhere from $18,000 to $30,000 per-month, and Rowan’s symptoms are getting worse.

“She’s going to lose the ability to walk, talk, and eat, nothing any mother wants for their child. How can you watch your child decline everyday? You want to call someone for help and there is no one to call,” she said.

Rowan’s parents filed an appeal with their daughter’s insurance company to see if they will cover the costs of the drug. There is a GoFundMe account set up and anyone who wants to help can also make a donation at any Huntington Bank.