A BAHRAINI family has made a desperate appeal for treatment to help ease the suffering of their three children stricken by a rare muscular disorder.
Fahad, nine, and twin sisters Judy and Joorie, seven, have been diagnosed with type three Spinal Muscular Atrophy (SMA), a genetic condition that weakens muscles and impairs movement.
Their father, Mohammed Idris, had thought he had secured funding to take their children abroad but claims this has recently been rejected.
“I am a simple citizen trying to make ends meet and my children are struggling right in front of my eyes,” he said. “Their situation is deteriorating by the day.
“They walk with difficulty, stumbling and falling, and they are unable to get up on their own when they fall. They can’t even do the most basic of things, like put on their clothes or use the washroom.”
The 43-year-old government employee from Busaiteen believes their suffering could be lessened by a series of specialist treatments.
Experts say there are some that can help manage the symptoms of SMA, a serious genetic condition that worsens over time, according to studies.
Mr Idris and his wife Ayam, who have no family history of the condition, noticed their son falling down frequently when he was around three. Later he developed muscle weakness in all of his limbs.
Fahad was diagnosed with type III SMA by doctors at King Hamad University Hospital who referred him to a specialist at Salmaniya Medical Complex (SMC).
“The SMC doctor suggested I do the test on my daughters as well – they were around two at the time. My worst fear proved true and they were both diagnosed with the same condition – I was shattered.
“My daughters had no symptoms at the time. Unfortunately, their condition also deteriorated over time too.”
Mr Idris says he had filled out the necessary paperwork to apply for treatment abroad and claimed he was assured the application to the Health Ministry would be received favourably and arrangements would be made in early 2020.
“But then the pandemic hit the world, and travel was prohibited,” he said. “When the ban was lifted, I went back to the department, and was told my request had been denied.
“Last summer, I discovered the Al Jalila Specialised Hospital for Children in Dubai and travelled there with the assistance of charitable people, where my children were examined.
“They told me there was a suitable treatment – an injection every four months that costs around BD50,000. According to the doctors, this will prevent my children’s health from deteriorating further, as they were on the verge of losing their ability to walk.
“I returned with the report to SMC. A doctor said he would submit a request to the ministry to get the medicine as soon as possible. I believe he submitted the report in June. I have not heard anything back.”
The Health Ministry had not responded to a request to comment on the family’s plight by the time the GDN went to press.
raji@gdn.com.bh
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