July 9, 2021 – Athletes, influencers, musicians and people around the world work together to raise money that could potentially save the life of a 17 month old girl in Denmark.
At 10 months of age, Ayah Lundt was diagnosed with spinal muscular atrophy (SMA) type 2, a rare genetic disorder that affects about 1 in 10,000 children. Children and babies with SMA often have difficulty breathing, swallowing, controlling their head movements, and standing up unaided due to the weakening and shrinking of their muscles due to a defective or missing gene.
SMA is the number 1 genetic cause of death in infants. The good news is that there is treatment. The bad news is that the drug costs a whopping $ 2.1 million.
The FDA approved the drug Zolgensma in 2019 for the treatment of SMA in children under 2 years of age.
More than 1,200 patients have been treated with Zolgensma worldwide, says a spokesman for Novartis Gene Therapies, the company that makes the drug. There are a number of insurers in the US that cover Zolgensma, sometimes with restrictions.
In Denmark, Zolgensma is only approved for children with SMA under 6 months, even if a patient can afford the drug for over 6 months.
Since Ayah is not eligible, her parents, Frank Lundt, the Dane, and Mary Mithika, who are from Kenya, say they are in contact with Boston Children’s Hospital to treat Ayah if they can raise enough money to help Zolgensma and travel arrangements to cover.
After her diagnosis, Ayah’s family started raising money to buy the medication before Ayah turns 2.
When CNN published an article on Ayah’s story in late March, Mithika said the family raised a million dollars in just 24 hours.
“We didn’t sleep,” says Mithika. “We literally scrolled up GoFundMe and updated every minute through the morning. We said, ‘Oh my god, pack your bags, we’re going to the hospital next week!’ “
However, the donations decreased after a few days.
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