It was a race against time for Kathure Mithika to raise $2,180,000 or Ksh.240 million to save her daughter Ayah Lundt who suffers from a rare disease.
Baby Ayah was diagnosed with spinal muscular atrophy, a genetic disease found in one in 10,000 children born worldwide.
Ayah’s parents were in a race against time to raise $2.1 million for a one-time, potentially life-saving treatment before she turned 2.
The treatment is called Zolgensma. At Ksh.240 million a dose, it’s referred to as the world’s most expensive drug.
Spinal muscular atrophy (SMA) is a progressive disease caused by a defective gene. The disease kills nerve cells and causes baby’s muscles to waste away, which can lead to difficulty swallowing or breathing.
As their muscles deteriorate, infants suffering from SMA develop finger tremors and a curved spine. They cannot stand or walk unaided, and most don’t survive past early childhood due to respiratory failure.
Zolgensma, the gene therapy treatment, is not a guaranteed cure. Baby Ayah will never walk again even with the treatment.
A one-time intravenous dose however delivers a fully functional copy of the gene into the target nerve cells, altering the child’s biology and improving muscle movement and function.
The drug is not approved under universal health care in Denmark, where Ayah’s parents live. Mithika is married to her Danish husband Frank Lundt.
Ayah’s parents raised the money to get her treated in US, where Zolgensma was approved in 2019 for use on children under age 2.
The parents had to raise the Ksh.240 million before Ayah turned 2 because after that she wouldn’t be eligible for the treatment.
It has been a journey for the family of 19-month-old baby Ayah, but after 33 weeks they have finally managed to raise the Ksh.240 million.
Ayah will in the coming days go to the Boston Children’s Hospital for the treatment. The family thanked everyone who donated towards their daughter’s expensive treatment.
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