Ayah Lundt, a baby in Denmark, was born healthy. However, Lundt’s health took a turn for the worse when the cutie turned nine months old. She was diagnosed with spinal muscular atrophy (SMA), a rare genetic disease that causes muscles to deteriorate. Now, her family is struggling to treat the disease because of the incredible financial responsibility.
In order to treat Lundt’s SMA, she needs a special gene therapy treatment called Zolgensma. The treatment alone isn’t guaranteed to cure her SMA but could help to improve muscle function, according to CNN.
Another issue with Zolgensma is the treatment’s whopping price tag.
Ayah Lundt’s progress suddenly reversed. She could not lift her head while lying down, sit on her own or clap — all things she’d excitedly done before. https://t.co/8DNWRWQrvu
— CNN Philippines (@cnnphilippines) April 1, 2021
Often described as the “world’s most expensive drug,” Zolgensma costs around 2.125 million per person receiving the treatment. The one-time treatment has been approved by the federal Food and Drug Administration but remains elusive to patients and families who can’t afford it.
Initially, Lundt developed normally then she began to lose control of her muscles. The baby girl was unable to eat with a spoon or crawl as she had before.
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To help her family cover the cost of the expensive treatment, a foundation called “Help Ayah” has been established in her patria of Denmark. According to the foundation, the young child needs treatment before her second birthday in January 2022.
“If she receives the new treatment, which is one-time gene therapy, it will stop the depletion of her muscles and give her a chance to be an independent girl not restricted to a wheelchair…All donations go entirely to Ayah’s treatment through the Foundation. There are no administrative expenses as everyone in the team works on a volunteer basis,” the foundation says.
Donations will be accepted via the foundation site until January 9. The family also has a GoFundMe page.
