July 9, 2021 – Athletes, influencers, musicians and people around the world are teaming up to try to raise money that could potentially save the life of a 17-month-old girl in Denmark.
At the age of 10 months, Ayah Lundt was diagnosed with spinal muscular atrophy (SMA) type 2, a rare genetic disorder that affects approximately 1 in 10,000 children. Children and babies with SMA often have it hard breathe, swallow, control their head movements, and sit unaided because their muscles are weakened and contracted due to a defective or missing gene.
AMS is the leading genetic cause of death in infants. The good news is that there is a cure. The bad news is that the drug costs $ 2.1 million.
The FDA approved the drug Zolgensma in 2019 to treat SMA in children under 2 years of age.
More than 1,200 patients have been treated with Zolgensma worldwide, a spokesperson for Novartis Gene Therapies, the company that produces the drug, said in a statement. In the United States, there are a number of insurers that cover Zolgensma, sometimes with certain limitations.
In Denmark, Zolgensma is only approved for children with SMA under 6 months of age, although a patient over 6 months of age can afford the drug.
Because Ayah is not eligible, her parents Frank Lundt, who is Danish, and Mary Mithika, who is from Kenya, say they are in contact with Boston Children’s Hospital to treat Ayah if they collect enough funds to cover Zolgensma and travel arrangements.
After her diagnoses, Ayah’s family began to fundraise to buy the drugs before Ayah was 2 years old. Mithika says they have raised around $ 60,000 in 4 months, which has only scratched the surface of the money they need.
When CNN published an article on Ayah’s story in late March, the family raised $ 1 million in 24 hours, according to Mithika.
“We didn’t sleep,” says Mithika. “We were literally scrolling GoFundMe, updating every minute until the morning. We were like, ‘Oh my God, pack your bags, we’re going to the hospital next week!’ “
However, donations declined after a few days.
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