Name: Zayd

Parent: Sadia

Year of birth: 2018

Home Town & Country: London, UK


Zayd was born in April 2018 without any complications. He seemed to be a content baby who hardly ever cried. 

When he was 3 months old, I took him to an ophthalmologist as he wasn’t making any eye contact. Zayd was diagnosed with high myopia and bilateral cataracts.  

In January 2019 he had bronchiolitis and an X-ray showed he had diaphragmatic hernia, which was operated upon. Zayd has an unsafe swallow for liquids and is fed through ng tube. 

He was diagnosed with having Chiari 1 malformation but doctors still could not find out the reason for all his conditions. 

I finally got the much awaited diagnosis in June 2020 that Zayd had RARB mutation and there was no treatment or cure for it. The doctor said whether Zayd would ever sit or stand depends on how far physiotherapy can push him to reach his potential.  My little boy is under 4 different hospitals in the UK; they have started to feel like a 2nd home to us now. 

Looking after a special needs child as a single parent is stressful as his siblings sometimes feel left out. However that one smile Zayd gives makes up for everything. He is the purest gift God could have given me. My son may never reach what other kids his age would, but I´ve accepted the fact that he came into my life to be loved only. And he surely knows how to get all the love and attention with his cheeky and quirky nature. I hope that one day there could be a therapy to help Zayd and other beautiful children suffering from MCOPS12.