A father battling a rare and debilitating condition today begged: “Help me get better so I can come off benefits and live a normal life.”
Jamil Shahparifar, 34, who lives in Leyland, longs to go out to work and be an active dad to his young daughter but says he says he feels trapped by his own body because of the neurological disorder transverse myelitis.
The condition, which causes weakness and numbness of the limbs as well as motor and sensory deficits, has left Jamil barely able to walk.
There is no cure and Jamil is pinning all his hopes on stem cell treatment in China which could improve his symptoms by up to 40%. But he needs to raise £18,000 to fund the treatment.
He said: “I am living off benefits that I am entitled to claim, but I don’t want to be on them – I want to be able to work and feel useful and part of society.
“I want a better life for me and to give my daughter a better life. I don’t want money from the Government, but at the moment, I have no choice,”
Jamil was healthy and active until the age of 21 when he was suddenly struck by pains in his limbs and being affected by freezing and burning sensations in his feet.
His condition deteriorated rapidly leading to balance problems and severe headaches. Jamil had been hoping to join the army as a chef and driver, but he failed the tests because of co-ordination problems. He was referred to hospital for tests, but for a long time, doctors could not get to the bottom of the issue.
At first they thought Jamil had multiple sclerosis but tests proved negative.
Eventually, 18 months later, Jamil was discovered to have transverse myelitis, which affects around 300 people in the UK a year. It is a rare disease of the central nervous system involving inflammation in the spinal cord. The inflammation causes swelling which can block messages travelling along the spinal cord.
Some experts believe that it could be triggered by a simple viral infection, but the exact cause is unknown.
Jamil says the condition means he cannot walk any distance as the strength in his legs has gone and he admits he has become a recluse as he feels that people are judging him.
He said: “I feel trapped by my body. There is so much I want to do, but I can’t.
“I have a seven-year-old daughter Sara who I see once a week and I would love to be an active dad.
“I used to go swimming, but my balance has got so bad, I am even avoiding that as last time I fell and cut myself.”
After carrying out research on the internet, Jamil found out about the Wu Stem Cells Medical Centre in Beijing which uses stem cell injections to treat a variety of different conditions.
Stem cell treatment is not carried out in the UK and is seen as controversial as it is experimental and often uses stem cells from early stage embryos raising ethical and religious questions.
The treatment at the Wu Centre does not promise a cure, but the possibility of an improvement in the quality of life.
Jamil said: “I know if I manage to raise enough money to get this treatment in China, it will not be a miracle cure, but a 40% improvement in my symptoms would change my life dramatically.
“It will cost around £18,000 for me to have this treatment, but if I don’t get it, I will be paid a lot more in benefits over the years and my goal is to get well enough to be able to work - in any job - so I don’t have to claim benefits.
“At the moment, I am getting housing benefit, disability living allowance and employment and support allowance.
“It roughly amounts to about £1,600 a month, but I can’t save from this as it all goes on my living costs.
“I would sooner not be on benefits and be able to earn money through my own hard work. I hope people come forward to help me by fundraising so I can have the chance of having my life back.”