A little Kenyan girl, Ayah Lundt, is hoping to receive the world’s most expensive drug which costs Ksh 230 million, for the treatment of a genetic disease, after Kenyans and the rest of the world joined hands in raising the money.
An online fundraiser at the American for-profit crowdfunding platform, GoFundMe, has so far garnered over Ksh 123 million ($1,134,350) after her plight was featured on CNN. Ksh 108,950,000 was raised within one hour after the fundraiser for purchasing the drug, Zolgensma, commenced.
Ayah,14 months old, stays with her Danish father, Frank Lundt, and Kenyan mother Mary Mithika in Denmark. She was diagnosed with spinal muscular atrophy (SMA) in November 2020 when she was just but nine months old.
SMA is a rare genetic disease that affects the central nervous system, voluntary skeletal muscle movement, and the peripheral nervous system (the connection between the central nervous system and the rest of the body).
Frank Lundt, wife Mary Mithika and daughters in a family photo.
As a result, SMA affects basic motor functions such as walking, hand movements and feeding. After progression, the patients lose the ability to swallow, breathe and eventually die, mostly when they turn two years old.
The organisers said that little Ayah can only receive the treatment in the US and rallied on her friends, relatives and well-wishers to aid her.
Mithika, Ayah’s mum said that they noticed the symptoms when she turned nine months old. She failed to lift her head and her legs carved too.
“I think about the cost every day, and it weighs me down. And then I look at Ayah and see her getting worse. As a parent, what would you do if you knew there’s something out there that can save your child?” Mithika, who had then broken into tears told CNN.
“We just want what every parent wants — the best for their child,” she added, saying that she would love to see her daughter play with her other sibling whose already 2 years old.
However, the drug being sought after, Zolgensma, does not reportedly guarantee cure. Even though she may receive the life-saving treatment, her mother believes that she may remain disabled for the rest of her life.
“We were so excited about having another princess. She is perfect. She has always been such a happy child, even now with all this going on,” Mithika cried adding that she at times struggles to play with her sibling and then breaks down after finding out that she cannot move her feet.
Doctors warned that even after treatment, the family may need to carter for more expenses as treating and caring for patients with SMA can cost up to Ksh 653, 700, 000 (more than half a billion) for the first 10 years.
Ayah Lundt on Oxygen supply after being diagnosed with spinal muscular atrophy (SMA) in November 2020