Yahya Mokhtar Mohyeldeen greets us with a smile in his Jumeirah Village Circle apartment. He is tossing and turning in his cradle, making baby sounds.
Yahya is three years old, but has a body of a six-month-old. He is suffering from a rare genetic syndrome – Russell Silver Syndrome (RSS) – because of which his growth has been stunted.
Yahya cannot drink, eat or walk by himself. He is only fed milk, that too through a special tube and he’s so small that his nine-month-old sister, Malak, looks bigger than him.
“Yahya was born with multiple congenital abnormalities. It was only when he was five months old that doctors diagnosed his medical condition. Due to the delayed diagnosis, the preventive action that should have been taken earlier – happened much later. Now his right hand is longer than his left and so is his right leg,” said Yahya’s father, Mokhtar.
Last December, his parents raised funds for him to travel to the U.S. and Paris to meet doctors specialising in RSS syndrome.
“We found out that Yahya’s condition was truly rare. Among the hundreds of children suffering from RSS syndrome we met in Paris, he was the only one who could not walk. So much so the hospital in Paris has undertaken a research project on Yahya as they said this was one of the most complicated RSS syndrome cases they’ve come across,” said Mokhtar, an Egyptian.
“The hospital conducted some tests on him. It was not cheap and cost about €20,000 (Dh99,835),” he added.
Mokhtar lost his job as a sales executive last August as he had to spend a lot of time away from work to take care of Yahya. “It’s difficult for people to understand my situation, and I don’t blame them. My wife works as a pharmacist, earning Dh12,000 a month. But our monthly medical expenses on Yahya, including physiotherapy and speech therapy sessions work out to more than Dh12,000. We need financial help.
“His growth hormone injection costs around Dh3,650 a month while his physiotherapy, speech therapy sessions work out to more than Dh3,000 a month. Then there is the doctor’s charges, maintaining his feeding kits etc – it all gets too expensive.”
Mokhtar, who suffers from Type 1 diabetes, said he is unable to take up a job as he has to be with Yayha all the time. “I just cannot leave him in the hands of a housemaid,” he said.
By Anjana Kumar
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