Indianapolis, Indiana – Rowan Dingledy, age 6, was identified as having CLN3 Batten disease. The rare condition is incurable and has no known treatment. In certain situations, a child may only live into their 20s and it can induce convulsions and blindness in children.
“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.
Prior to their seeing a problem, Rowan’s parents claim their preschooler was content and healthy.
“We noticed that she began to miss objects out in plain sight with her vision,” Eric said.
Before a specialist performed some tests on Rowan, physicians initially believed she had a form of juvenile blindness. “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.
Although Rowan’s insurance would not pay for it, there are medications that can help delay some of the effects. “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.
The cost of a month’s worth of medication ranges from $18,000 to $30,000, and Rowan’s symptoms are becoming 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 every day? You want to call someone for help and there is no one to call,” she said.
In an effort to get their daughter’s insurance company to pay for the medication, Rowan’s parents filed an appeal. Anyone who wants to contribute can do so at any Huntington Bank or through the GoFundMe account that has been established.
