Parkville parents try to raise nearly $250k for daughter’s treatment after insurance won’t cover cost

PARKVILLE, Mo. (KCTV) - A family hopes to raise tens of thousands of dollars in the next few months to start a potentially lifesaving treatment for their 8-year-old.

Alison and Ryan Anstaett first noticed a problem with their daughter, Ella Mae, when she seemed to be losing her vision. Ella Mae had been holding her books and schoolwork close to her eyes, as if she couldn’t see it. Her teachers had also told them she had been having problems in class.

“I knew then something was off,” Alison said.

After a few months of doctor visits, an ophthalmologist diagnosed their daughter with macular degeneration. That led to a genetic test. In January, the test revealed that Ella Mae had Batten disease. It’s an extremely rare, terminal, and degenerative condition. There is no cure for it and no known survivors.

“When we got the diagnoses it was like I was in a movie where I fell to the ground and just cried,” Alison remembered.

There may be some hope in a drug called miglustat, which is most frequently used to treat Gaucher disease. It is being researched as a potential treatment for Batten disease and shows promise as a means of slowing, or even reversing, its degenerative effects. However, it is not FDA approved for Ella Mae’s condition.

For that reason, the Anstaetts said, insurance will not cover the drug. It will cost approximately $20,000 per month.

“Fundraising is the only option,” Alison said.

The Anstaetts have planned a series of fundraising events to help collect money. They’ve also launched a GoFundMe page and have a Venmo account set up for donations.

In June, the family has planned a 5k event in Parkville. In July, they’ll be the beneficiary of a poker tournament at the Oak Ridge Family Social Club.

So far, they have collected around $80,000 and that’s nearly enough for them to feel comfortable starting the miglustat treatment.

“It gives us hope again,” Alison said.

The Anstaetts are hopeful that the treatment will help prolong Ella Mae’s life and potentially restore her eyesight.

“We’re against time,” Ryan said. “We maybe have 15-20 years. This gives us hope to prolong that time. We can extend her quality of life.”