After 33 weeks of racing against time to save the life of Ayah Lundt, her family has officially confirmed that on Tuesday they finally hit their target.
Ayah at nine months was diagnosed with spinal muscular atrophy (SMA), a genetic disease found in one in 10,000 children born worldwide.
The rare condition has a cure and for Ayah, she needed to acquire the world’s most expensive drug and treatment called Zolgensma which costs $2.1 million (Ksh230 million) a dose before the age of two.
Taking to social media, the family on Instagram posted a statement noting:
“After 33 weeks of sleepless nights and tears, we are here!!! We want to thank God for bringing us this far, for blessing us immensely even when we fall short of His glory, for guiding us and getting us here. For health and wealth.”
“To our family and friends… You were the very first to know, we requested your support, and you went all out for us, you fought for Ayah like your own, even when the world didn’t know about SMA or couldn’t fathom a single treatment could cost millions of dollars!! Thank you for standing with us and helping us create a network and a community!”
These donations not only come through community support groups in Kenya but also worldwide all across Denmark, the US and all over Europe with notable celebrities using their platforms to help raise the cash.
About the condition (SMA) and its treatment
Spinal muscular atrophy (SMA) is a progressive disease caused by a defective gene. The disease kills nerve cells and causes infants’ muscles to waste away, which can lead to difficulties in swallowing and/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 however the one-time intravenous dose 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 only available in the US which approved for use on children under age 2 in 2019 as reported by international agencies.