July 9, 2021 — Athletes, influencers, musicians, and other people across the globe are teaming up in a last push to boost cash that would probably save the lifetime of a 17-month-old lady in Denmark.
At 10 months previous, Ayah Lundt was recognized with kind 2 spinal muscular atrophy (SMA), a uncommon genetic illness that impacts about 1 in 10,000 kids. Youngsters and infants with SMA typically have trouble breathing, swallowing, controlling their head actions, and sitting up with out help as a result of weakening and shrinking of their muscular tissues because of a faulty or lacking gene.
SMA is the No. 1 genetic reason behind dying in infants. The excellent news is there’s a therapy. The unhealthy information is the medicine prices a whopping $2.1 million.
The FDA approved the drug Zolgensma in 2019 to deal with SMA in kids below the age of two.
Greater than 1,200 sufferers have been handled with Zolgensma globally, a spokesperson from Novartis Gene Therapies, the corporate that produces the drug, says in a press release. In the USA, there are a variety of insurers that cowl Zolgensma, typically with sure limitations.
In Denmark, Zolgensma is barely approved for youngsters with SMA below 6 months previous, even when a affected person over 6 months previous can afford the drug.
As a result of Ayah is ineligible, her mother and father, Frank Lundt, who’s Danish, and Mary Mithika, who’s from Kenya, say they’re in touch with Boston Youngsters’s Hospital about treating Ayah in the event that they elevate sufficient funds to cowl Zolgensma and journey preparations.
After her diagnoses, Ayah’s household started raising cash to afford the medicine earlier than Ayah turns 2. Mithika says they raised round $60,000 in four months, which solely scratched the floor of the cash they want.
When CNN printed an article on Ayah’s story in late March, the household raised $1 million {dollars} in 24 hours, in response to Mithika.
“We didn’t sleep,” Mithika says. “We had been actually scrolling on GoFundMe, refreshing each minute up till the morning. We had been like, ‘Oh my God, pack your luggage, we’ll the hospital subsequent week!’”
Nevertheless, donations dwindled after a few days.
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