A flicker of hope shimmers for 14-month-old Baby Ayah suffering from a rare genetic disease, spinal muscular atrophy (SMA) as Ksh123 million has been raised for her treatment.
Her GoFundMe account so far has managed to raise the amount as spirited online campaigns to raise the full amount, Ksh230 million continues. A live online fundraiser has been slated for Easter Sunday, April 5.
Baby Ayah who lives in Denmark and born of a Kenyan mother Mary Mithika and a Danish father Frank Lundt began reversing her growth signs at nine months old.
Her mother told CNN recently 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 no longer crawl or do a thing.
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 diagnosed her with spinal muscular atrophy (SMA) whose 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.
Mary says that when she thinks of the cost of treatment, she breaks down 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?”
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.