Posted on Jun 7, 2023
An experimental drug could prolong this Parkville girl's life, but it costs $20,000 per month
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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.
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.
An experimental drug could prolong this Parkville girl's life, but it costs $20,000 per month
Posted from kcur.org
Children
Medical
Health
Drugs
Pharmaceuticals
Posted 11 mo ago
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PO1 William "Chip" Nagel
..."Ella-Mae is now legally blind. With the vision she has left, Alison and Ryan want to imprint as many memories as possible, knowing that in five to 10 years, she may not be able to engage the same way.
So far, they've gone to the beach to swim with dolphins, visited grandparents and even visited Disney World, where Ella-Mae dressed up as a princess and rode in a carriage through the courtyard as park staff and visitors serenaded her.
"You could tell by her face, she really felt like a princess," Ryan said. "She asked us, why does everybody keep calling me Princess? And I said because you're at Disney and you are a princess. She took that full on and loved it."
A few months ago, Ryan and Alison spoke with Ella-Mae's gymnastics instructor about the possibility that she may soon have to stop participating. But the instructor told them that wouldn't be necessary, and that they would help accommodate Ella-Mae if it is an activity she enjoys.
Those little things are helping keep their spirits up — like messages of support from their neighbors or home-cooked meals from friends and family. The Anstaetts say these acts of kindness give them the strength to keep raising money to get Ella-Mae the medicine she needs.
"Even if people can't donate money, just spread awareness because somebody has to know something, Ryan said. "Just share our story.""
..."Ella-Mae is now legally blind. With the vision she has left, Alison and Ryan want to imprint as many memories as possible, knowing that in five to 10 years, she may not be able to engage the same way.
So far, they've gone to the beach to swim with dolphins, visited grandparents and even visited Disney World, where Ella-Mae dressed up as a princess and rode in a carriage through the courtyard as park staff and visitors serenaded her.
"You could tell by her face, she really felt like a princess," Ryan said. "She asked us, why does everybody keep calling me Princess? And I said because you're at Disney and you are a princess. She took that full on and loved it."
A few months ago, Ryan and Alison spoke with Ella-Mae's gymnastics instructor about the possibility that she may soon have to stop participating. But the instructor told them that wouldn't be necessary, and that they would help accommodate Ella-Mae if it is an activity she enjoys.
Those little things are helping keep their spirits up — like messages of support from their neighbors or home-cooked meals from friends and family. The Anstaetts say these acts of kindness give them the strength to keep raising money to get Ella-Mae the medicine she needs.
"Even if people can't donate money, just spread awareness because somebody has to know something, Ryan said. "Just share our story.""
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The pharmaceutical companies are raking those in need over the coals. PO1 William "Chip" Nagel
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