Girl Requiring World's Most Expensive Drug to Save Her Life Receives Sh219 Million in Contributions

Well-wishers have contributed $2,063,500 million (Sh219 million) towards the treatment of Ayah Lundt, a 17-month-old baby who requires the world’s most expensive drug to save her life.

The amount is against a target of $2.1 million that the girl’s family seeks to raise for her treatment in the United States.

Ayah was diagnosed with a condition called spinal muscular atrophy and needs to undergo gene therapy called Zolgensma that costs a whopping $2.1 million, excluding other expenses that her parents cannot afford. At $2.1 million a dose, Zolgensma is the world’s most expensive drug.

Ayah is the daughter of Mary Kathure Mithika, a Kenyan-born woman living in Denmark. She is married to a Danish national and lives in Bornholm, an island in the Baltic sea.

In an interview early this year, Mary said her second-born daughter was born a healthy baby but she later developed complications that affected her mobility, head stability, and hand movement.

“Ayah was born a normal child she was a lovely baby. She continued growing normally like normal kids until she was 9 months…we started noticing a few changes, minor changes that if you are not keen you would not notice,” she said.

The child was found to be suffering from spinal muscular atrophy when a medical specialist examined her.

Although doctors told the couple that kids suffering from the condition rarely make it past two years, Mary and her spouse have refused to give up on their child.

“There is hope, they told us if it was like 4 years ago, there was no kind of treatment at all but now, there are 3 types of treatments in the market and if kids get treatment early, they get a chance to live well and longer,” she added.

Mary added that Ayah is stable at the moment but they fear that the illness could get worse as she grows. The girl will recover and live normally if she receives treatment at Boston Children’s Hospital in the US.

In April, Kenyan celebrities including Eric Omondi, Kwambox, Terence Creative, Robert Burale, Dr. Ofweneke, MC Jessy, Betty Kyallo, Wahu Kagwi, among others joined the campaign to help the family reach the target.

They hosted Instagram live sessions urging their fans to contribute whatever they have towards baby Ayah’s treatment. The sessions helped raise more than Sh7 million in 24 hours.

The family is still appealing to well-wishers to help them raise the deficit of $116,500.