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As the mother of a ten-year-old son with Duchenne muscular dystrophy, Jane Field supports research that might one day bring a cure to save other parents the anguish of watching active sons lose the ability to run, jump, walk.
Field who lives with her son Murray, husband Mark and daughter Finella, 22 months, in Droitwich, Worcestershire, says: “Stem-cell research might not benefit my son but what about the other boys being born? People who object to using embryonic stem cells think that Frankenstein monsters are being created but the reality is that the embryos are so young they are just a bag of cells.”
Most boys with Duchenne muscular dystrophy show the first symptoms between the ages of one and four. Suddenly they are unable to run or jump as well as their friends, have difficulty in climbing stairs or getting up from the floor. In Murray’s case Field, an osteopath, recognised the reason for his mobility problems while watching the way he got to his feet using his hands – a classic sign of the condition. “I called one of his paediatricians and asked ‘You wouldn’t have missed Duchenne muscular dystrophy?’ From her silence I knew that was what he had.
“Once you know the diagnosis you are shattered. During the first year there were some dark periods when I sat in bed all day and cried.
“Murray is doing fairly well and can still crawl on his elbows and knees due to steroids to keep him mobile. He used to say that scientists would make him walk again, but I notice he has stopped saying that. Everything is so frustrating for him. The local hospice, where he goes for a long weekend every six weeks, is a lifeline. He adores it and it gives us a break so we can do things with Finella.”
Dr Peter Zammit, at King’s College London, is investigating how stem cells might treat the condition. He says: “Muscle is made up of fibre, and sitting on the surface of the fibres are stem cells called satellite cells. When you damage muscles, it is satellite cells that repair them. In Duchenne the regeneration cycle continues for a time but then fails. By manipulating the stem cells there could be a treatment.
“Duchenne is a genetic disorder caused by an error in the dystrophin gene. In Canada donor stem cells were injected into the muscle cells of three boys and they made dystrophin protein. But the problem is delivery because thousands of injections of stem cells would be needed to cover a cubic centimetre of muscles.
“It is a terrible disease. The muscles eventually fail so they can’t move the bit of skeleton that they are attached too. As sexual maturity arrives the boys lose everything. They can’t breathe deeply so they get infections, they can’t swallow so they have to have liquified food and the heart is also affected.”
Dr Marita Pohlschmidt, director of research at the Muscular Dystrophy Campaign, says: “By the age of 12, boys with Duchenne muscular dystrophy are in a wheelchair. Usually they don’t live beyond 20.
“Embryonic stem cells have the potential to develop into any kind of tissue or organ in the body and are more potent for research than stem cells taken from an adult, which is why research using embryonic cells is so important.”
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My family and I are all for the use of embrionic stem cells. My son and only child has DMD too and I cant accept that I will out live him. He's a beautiful child who I adore and something has to be done. Those who oppose should live a day in our shoes.
Annette Rush, Petersfield, UK
People who oppose this sort of development cannot imagine the heartache of watching someone with Duchenne muscular dystrophy and knowing how their disease is bound to progress. Surely it is better to use non-sentient embryonic cells for this research, rather than live animal models?
Jannette Toomey, Bristol,