An experimental drug could prolong this Parkville girl's life, but it costs $20,000 per month

In January, the Anstaett family learned their eight-year-old daughter had Batten disease, a rare condition with a difficult — and eventually terminal — prognosis. The drug showing promise in slowing the disease isn't covered by their insurance because it's still in clinical trials.
Ella-Mae Anstaett loves gymnastics, road trips with her family and Disney princesses. She often spends the summer near the water, swimming at the pool or fishing with her little brother.

She is, to all appearances, an ordinary eight-year-old girl. But in early 2022, her mother, Alison, noticed Ella-Mae was holding books inches away from her face to read and standing near the TV when watching her favorite shows.