When she was born 14 months ago, the angelic Baby Ayah weighed 3.7 kgs and nothing beat the feeling of being a mother for Mary Mithika, a Kenyan woman based in Denmark.
Mary lives in Bornholm, Denmark. She told CNN that everything was normal for her little angel and would eat at six months and start crawling.
Baby Ayah loved bananas and mushy broccoli. Everything seemed normal until the ninth month when she stopped crawling and her legs became weak. She could not longer crawl or do a thing.
So sad was it that she was unable to even lift her head or hands.
Her mother said she was alarmed when she was unable to eat her oatmeal with a spoon yet she loved feeding herself so much.
Doctors would diagnose her with a rare genetic disease, spinal muscular atrophy (SMA). The cost of treatment known as Zolgensma is Ksh230 million ($2.1 million) which should be administered before she is two years old else, it will be irreversible.
Zolgensma remains the most expensive drug in the world.
There are only 10,000 reported spinal muscular atrophy cases in the world.
SMA is caused by a defective gene and progresses in killing nerve cells thereby weaking muscles which eventually weaken. In extreme cases, it affects the breathing and swallowing of an infant.
The spine also bends meaning movement is inhibited.
Though Zolgensma – therapy treatment – is the only form of treatment, it is not a 100 percent cure guarantee.
Since Zolgnesma is not approved in Denmark, she will seek medication in the US where it is approved.
Mary says that when she thinks of cost of treatment, she breakdown and feels like she has gotten to a dead end.
“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?”
Kenyan celebrities have rallied their fans to contribute towards the young girl’s treatment.
Comedian turned radio personality Jalango has raised Ksh400,000. Eric Omondi among other celebrities too, have rallied their fans to fundraise for Baby Ayah’s treatment.