July 9, 2021 — Athletes, influencers, musicians, and people around the globe are teaming up in a final push to raise money that could potentially save the life of a 17-month-old girl in Denmark.
At 10 months old, Ayah Lundt was diagnosed with type 2 spinal muscular atrophy (SMA), a rare genetic disease that affects about 1 in 10,000 children. Children and babies with SMA often have trouble breathing, swallowing, controlling their head movements, and sitting up without assistance due to the weakening and shrinking of their muscles due to a defective or missing gene.
SMA is the No. 1 genetic cause of death in infants. The good news is there is a treatment. The bad news is the medication costs a whopping $2.1 million.
The FDA approved the drug Zolgensma in 2019 to treat SMA in children under the age of 2.
More than 1,200 patients have been treated with Zolgensma globally, a spokesperson from Novartis Gene Therapies, the company that produces the drug, says 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 old, even if a patient over 6 months old can afford the drug.
Because Ayah is ineligible, her parents, Frank Lundt, who is Danish, and Mary Mithika, who is from Kenya, say they are in contact with Boston Children’s Hospital about treating Ayah if they raise enough funds to cover Zolgensma and travel arrangements.
After her diagnoses, Ayah’s family began raising money to afford the medication before Ayah turns 2. Mithika says they raised around $60,000 in 4 months, which 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 dollars in 24 hours, according to Mithika.
“We did not sleep,” Mithika says. “We were literally scrolling on GoFundMe, refreshing every minute up until the morning. We were like, ‘Oh my God, pack your bags, we’re going to the hospital next week!’”
However, donations dwindled after a couple of days.