Ailing Kenyan baby Ayah Lundt can finally get treatment after the target for the world’s most expensive drug was realized. This is after a series of fundraisers achieved the target that was an astonishing Sh. 240 million for the drug.
Baby Ayah was born in January last year at a whopping 8.3 pounds. At nine months, her developmental progress suddenly reversed. She could no longer lift her head while lying down, sit on her own or clap.
After medical examinations, Ayal Lundt was diagnosed with spinal muscular atrophy, a genetic disease found in one in 10,000 children born worldwide. The prescribed treatment for this condition was Zolgensma, which at a cost of Sh. 240 million is considered the world’s most expensive drug. Zolgensma is a gene therapy medicine for treating spinal muscular atrophy, a serious condition of the nerves that causes muscle wasting and weakness.
This set in motion the race to find the money before she turned age 2 years, to ensure maximum drug response. By March 2021, Ayah’s parents had only raised about $60,000 (Sh. 6,561,000) from various fundraisers that were conducted by among others comedian Eric Omondi, Terence Creative, Betty Kyallo and other local celebrities.
On August 31, after 33 weeks appeals, baby Ayah’s target has been realized. This amount was raised through support groups in Kenya, Denmark, all over Europe, and the US.
“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 for 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!” a statement on an Instagram page dedicated to fundraise for baby Ayah Lundt announced.
About this expensive drug:
Zolgensma is given once as an infusion (drip) into a vein lasting about 1 hour. The infusion should take place in a clinic or hospital under the supervision of a doctor experienced in managing spinal muscular atrophy. Before and after receiving the infusion, the patient will have a number of tests, including liver and blood tests, and will be given corticosteroid medicines to reduce the risk of side effects.
It is intended for patients with inherited mutations affecting genes known as SMN1, who have either been diagnosed with SMA type 1 (the most severe type) or have up to 3 copies of another gene known as SMN2. Spinal muscular atrophy is rare, and Zolgensma was designated an ‘orphan medicine’ (a medicine used in rare diseases) on 19 June 2015. Zolgensma contains the active substance onasemnogene abeparvovec.