Charity will raise awareness of rare disease which overcame Hackney father-of-three
- Credit: Archant
Over 150 people turned out to watch the game in Millfields Park on Saturday as a tribute to Suleman Vesamia, better known as Solly, who passed away on May 1 from a severe, aggressive rare form of Myositis - an inflammation of the muscles which is estimated to affect only two in a million people.
The children of a man who died of a rare muscle-wasting illness proudly presented a trophy dedicated in his honour to the winning team at a charity football match at the weekend.
Solly’s children, Aisha, 12, Eisa, 10, and Liyya, 8, handed over the 100-year-old sterling silver “Solly trophy” to a team representing their school, Millfields, which beat the Rushmore School team.
His friends in the community were inspired to organise the game, which they intend to be an annual event, because Solly was passionate about football and played every week in a dad’s after school group.
Hundreds of pounds were raised at the event through donations and food and drink sales, which will go towards a new charity set up by Solly’s wife Sham in his name to raise awareness of his condition and to raise funds for the Homerton Hospital, where he spent the last 10 months of his life.
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“Solly was such a generous kind hearted man and we talked about setting up a charity when he was to come home, sadly this was not to be,” said Sham.
“The staff went beyond the call of duty and we are forever grateful, they all showed compassion, sensitivity, support and patience.
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“Their calm and helpful manner put me at ease and I was able to go home at night to our children knowing that I had left Solly in such safe hands.”
Solly, who had run A & S Cycles in Chatsworth Road, Lower Clapton, for the last 28 years, suddenly became sick with the rare illness out of the blue.
Myositis means inflammation of the muscles that you use to move your body and the cause is unknown although thought to be through an injury, infection, or autoimmune disease.
“No one case is really the same, sadly Solly’s was a very severe, aggressive rare form of this condition,” said Sham.
“There’s not a lot known about it, so it’s a bit of a grey area, it’s linked to the immune system shutting down.”
She continued: “The earlier you catch the symptoms the better your chance of treating it and leading a so-called normal life, because there is no cure for it.”
She would urge anyone who feels extremely fatigued to ask their GP for a blood test checking creatine kinase levels, as once later symptoms like muscle ache, rash or facial swelling appear it may be too late to treat.
“At times the pain was unbearable as if my heart was being squeezed in a calloused fist making it difficult and hard for me to breath,” said Sham.
“I live for our children now. His legacy will continue through his children and they will follow in his footsteps as kind, generous, humble human beings.”
Sham was unable to attend the event at the weekend because she is going through the Muslim four-month mourning period, but is touched by the community’s efforts: “The excellent reputation Solly built up at our shop has been repaid in the same generous way from the local community, customers and friends.
“It is truly outstanding, but doesn’t surprise me as I fell in love with a man who was truly unique and special and loved by many,” she said.