Leukodystrophy: From manhood back to childhood
27th November 2012 -- Michael and Matthew Clark from Hull are two middle-aged brothers who suffer from an unknown form of leukodystrophy, a rare genetic disorder that attacks the myelin sheath covering the nerve fibres of the brain.
Although they are aged 42 and 39, the illness is making them become increasingly childlike. Their experiences were shown in a TV documentary on Channel 4 called 'The Curious Case of the Clark Brothers'.
The title mirrors that of the 2008 film 'The Curious Case of Benjamin Button', which stars Brad Pitt and features a man who starts ageing backwards towards being a baby again.
Michael and Matthew Clark: Image Channel 4
What is leukodystrophy?
The support group the Myelin Project says there are 36 known genetic demyelinating diseases or leukodystrophies. Although adult leukodystrophy has been described before, the type the brothers have is classed as unknown. These conditions affect people in different and debilitating ways and there is no current cure. Loss of myelin is also involved in multiple sclerosis, but in this case the loss is patchy and may recover.
Leukodystrophy causes a progressive loss of all neurological functions: speech, memory, movement, sight, hearing, touch, eating and swallowing. The conditions are rare and usually affect children.
What makes the brothers' case more exceptional is for the condition not just to develop in adults, but to affect two members of the same family.
What's happening to the Clark bothers?
Increasingly, Michael and Matthew Clark now behave like children and are unable to look after each other. It is described as a journey from manhood back to childhood.
Their mum, Christine, says they're not going to get smaller or younger like the fantasy described in the Brad Pitt film. She says they're not children, but need to be treated like adults with a problem.
The parents had retired to Spain, but have had to return to the UK to look after the brothers around the clock.
The Myelin Project has been advising the family on what the future holds for the brothers, and what physiotherapy and nursing care may be needed. Matthew already uses a wheelchair.
The Myelin Project's CEO Lynda Carthy describes the brothers as "delightful, absolutely delightful. They are wonderful men.
"They are going through a very tough illness. When I met them, they were on top form. Very cheeky and mischievous, bubbly and happy."
However, not all days are like that, she says: "I've spoken to the dad Tony this morning and they're having problems because it's morning and the daily routine - they get quite stressed out, upset and emotional. It’s like dealing with two children in a way."
Lynda says the TV documentary is important in raising awareness of leukodystrophies: "We're a small community and because the conditions are so rare, health professions don’t really know much about it. People are often told there are perhaps only one or two other leukodystrophy sufferers in the UK and that's not the case. But they feel very isolated."