Yemeni couple comes to India to save child with rare disorder; in trouble to go back home
From war-torn Aden, they somehow managed to escape and save their child with rare disorder; now the family's battle for the future begins
A Yemeni couple whose three-year-old was treated for a rare neurological disorder in Delhi is now caught in a quandary, with no home to go back to and other recourse in a strange land.
Mahmood Shaker Edres (32), a mechanical engineer from Aden, his wife Buthina (28) and two children Shaker (3) and Ekhlas (1) arrived in India in February on a six-month medical visa. Shaker was diagnosed with Craniosynostosis, a condition that causes problems with normal brain and skull growth.
“When Shaker was born, we were thrilled,” said Edres, about their first child. “A few weeks later, his grandmother noticed something wrong with the shape of his head. Doctors said his skull bones haven’t expanded in line with the growing brain. He was in constant pain and got intense seizures.
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Around this time, Edres, who worked as a liaison and security officer at ACF International (the international non-profit Action Against Hunger, which works in Yemen). “Due to the war I lost all means, my job, house, car and all the savings. I ended up jobless, broke and couldn’t feed my family. I have not spoken to my parents since I came to India and am concerned about their whereabouts. We didn't have access to even the basic necessities,” he said.
After Shaker was diagnosed, a friend suggested treatment in Germany, but Edres could not afford even the discounted $3,500 and chose India. With Yemeni air space shut, the family reached Delhi via Egypt and Jeddah. His research led him to Medanta in Gurgaon, where the skull could be restructured using biological blades to reduce the pressure on the brain. The procedure would cost $9000. Some Samaritans in Delhi, fund-raiser Ketto and NGO Foundation for Poverty Alleviation, helped him raise the money. (A Ketto official told mid-day they could only manage R21,000 on the platform.)
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“We did the surgery a few weeks ago and the child is doing well,” said Dr VP Singh, neurosciences chairman, Medandta.
“I am happy that my son got operated, but I owe people over $7500 and I am left with only Rs 3,500. I sold my property in Aden for $15,000, a major portion of which went for the air tickets ($4500) as there is no direct flight to India. The remaining money went on hotel stay and transportation for the last few months that we have been in India,” said Shaker, who worked as security officer before the war.
Situation in Yemen at the moment
Now, Edres is struggling to pay back his backers and also to sustain his family. “What was left was hardly enough for the surgery, which is why people came forward to help me financially and I have to return them their money. If I go back to my country, it will not be suitable for my son’s future. I tried to settle in India, seeking asylum but it has not worked out,” he said.
What is Craniosynostosis?
Mumbai neurosurgeon Dr Shashank Joshi, who had performed a similar surgery in 2005, said it is a rare condition (1 in 1,00,000) where an infant skull becomes triangular as the joints between two skull bones prematurely fuse, restricting brain growth.
“It severely impacts overall development and with cerebrospinal fluid (CSF) pressure going high, it directly impacts vision,” he said. “Surgical intervention is the only treatment. After surgery, the infant require continuous monitoring and therapy, as it is known to impact behavioral growth and IQ.”
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