International Mom Story - Mary Kathure Mithika
My name is Mary, mother of Ayah. I live on Bornholm with my husband Frank and our daughters Amira (2 ½ years) and Ayah (14 months).
When Ayah was born on January 15., 2020, our life was great. Ayah evolved like a normal baby. She rolled, sat up and ate herself. When she was 9 months old, we suddenly noticed changes. She had trouble raising her right hand, sitting up like she used to and just lifting her head was a challenge. We got her examined and were diagnosed with SMA type 2 (Spinal Muscle Atrophy) and the doctor told us Ayah would never go.
SMA is a rare genetic disease that causes progressive weakening of the child's muscles. It gradually affects the child's ability to crawl, walk, breathe and in the difficult cases the child will die from it within the first years of life. I felt like my world was falling apart completely.
Fortunately, there was the opportunity to treat Spinraza, which can mitigate the development of the disease by injections into the spine. Ayah has so far received 4 doses of Spinraza, and must continue treatment, every four months, for the rest of her life.
The doctors we talked to told us about Zolgensma - which is the closest one gets to a cure for SMA. The problem was that Zolgensma has not yet been approved in Denmark. Zolgensma is a gene therapy treatment that goes in and replaces the lack of gene that causes SMA with a functional and thus slow down the development of the disease. Patients receiving treatment with Zolgensma in time can get the opportunity to go and develop as a normal child. Treatment is only given to children under 2 years old - Ayah is 14 months old today.
Apart from the time window, which is closing in on getting the treatment, the costs are yet another challenge. The total treatment abroad (USA) - which is a single treatment - runs up to 15 million Danish kroner.
We fight, in short, a fight against both time and a fight to get enough funding to pay for the treatment. As a mother of Ayah, I will do everything in my power to get her treated with Zolgensma in the USA and give her the opportunity to go, play and live a normal childhood. But my ′′ everything ′′ is just not enough.
I sincerely hope my message reaches as many helpful souls as possible. Watching Ayah struggle to lift her head, roll, crawl or anything other kids her age can is hugely painful as a mother and we simply have to believe in miracles.
Help my daughter Ayah get a normal life Even the smallest donation can mean the world.
We have set up the Ayah Mithika Lundt Foundation, where all donations go in. You can donate both through GoFund and MobilePay 463363. Read more: https://www.helpayah.dk/
To listen to Kathure’s podcast on My Kids Think I’m Cool Podcast on
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