A DOTING dad whose son has a muscle-wasting disease for which there is no effective treatment or cure is raising cash for pioneering research at a world class institute in Sheffield.
Mohammed Amin’s son Saeed was diagnosed with spinal muscular atrophy or SMA when he was two.
Tthe degenerative neurological condition prevents nerve cells in the spinal cord functioning properly, causing muscles to weaken and eventually stop working.
The prognosis for patients with the disease - similar to motor neurone disease in adults - is not good, with some given a life expectancy of only two years.
But 14-year-old Saeed has battled bravely through the condition - resorting to a wheelchair full-time only three years ago.
He attends Fir Vale school, just over the road from where he lives with his dad and mum Rafiza, and uses a laptop to complete work since writing became a struggle.
Now taxi driver Mohammed, after becoming frustrated with the limited treatment options available for patients, has organised a charity dinner to raise money for the Sheffield Institute for Translational Neuroscience, based on Dorset Street opposite the Hallamshire Hospital.
The centre is Europe’s first dedicated research institute for motor neurone disease and related conditions like SMA.
Mohammed wants to raise cash for a gene therapy programme for SMA patients being carried out there by Professor Mimoun Azzouz.
Prof Azzouz will also be a guest at the event, which takes place on May 22 at the Orient Express on Princes Street, Masbrough, Rotherham, to talk more about the project.
Mohammed, aged 41, said: “We couldn’t believe it when doctors told us the diagnosis when he was a little boy.
“We just couldn’t take it in - it’s not something you ever believe will happen to you.
“Despite the condition, he enjoys all the things regular teenagers do - he likes playing on his Xbox and surfing the internet.
“He is a very intelligent and brave boy - always pushing himself as much as he can.”
n Contact Mohammed on 07930 341034 or email firstname.lastname@example.org to buy tickets which cost £15.