Imagine being born an old man and dying an infant. That’s exactly what happens to Brad Pitt in the 2008 movie “The Curious Case of Benjamin Button“, and a version of that is happening right now with a pair of brothers in Britain.
Michael and Matthew Clark seemed to be leading fairly normal middle class British lives.
Matthew was outgoing and an average student. Michael was shy and particularly good at math. After school Michael became a gunner in the Royal Air Force, but left at age 22 when he suffered a knee injury. Michael went on to become a cabinet maker. In 2001, he married but the marriage collapsed after five years.
After school Matthew took a job in a pottery store. He married and had a daughter, Lydia. But his marriage also only lasted five years.
“We think now that they were both slowly developing symptoms which, of course, affected their marriages,” the boy’s mother told reporters.
But at the time neither mom nor dad could detect anything was amiss and in 2007 they bought a retirement home on the coast of Spain. Not long after things started to crumble for the boys back in Britain.
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In May 2011 Michael was evicted from his flat and took to sleeping in a local park. His parents tried to call and text but were unable to reach their son. After several weeks Michael was directed to a hostel run by the Salvation Army. The staff realized he had a problem and arranged for him to be examined in a hospital. When the doctor asked if he had siblings Michael gave Mathew’s address. That doctor may well have saved his life.
Matthew was found in his flat, living without gas or electricity and barely any food. He was utterly unable to take care of himself.
The Clark brothers were assessed by a team of doctors who determined they had Leukodystrophy, which refers to a group of neurological disorders caused by genetic damage to the myelin sheath, the protective covering that surrounds nerve fibers in the brain. This prevents the brain from sending out correct messages to the body, which makes basic functions such as walking and talking difficult, and also, in the case of Michael and Matthew, leads to the display of childlike qualities.
“The two men still look their age, albeit with a disarming air of innocence about them, but they are beginning to exhibit physical signs of their regression back into childhood, manifested by the loss of most of their leg and chest hair,” read an article that appeared last year in the Daily Mail.
“When I visit,” continued the reporter, “I find the set-up strange, almost surreal, as though the clock has been turned back 35 years and the children living at home are unruly toddlers rather than strapping men,”
They play board games but not difficult ones like Cluedo (known as Clue in the U.S.), more like simple ones, such as Snakes and Ladders (Chutes and Ladders). They eat potato chips, they watch The Smurfs, they play with toy trains, and a Mr. Potato Head toy. Balloons excite them.
Parents Anthony and Christine, who had retired to Spain, returned to Britain to take care of their sons. And because of the poor housing market they have been unable to sell their home back in Spain. The entire family is now living in a one bedroom apartment.
Leukodystrophy is estimated to affect just 100 people in the UK. For the disease to develop two people, each with the recessive trait, must mate, and both genes must be passed on to the offspring.
“The chance of two people who carry the leukodystrophy gene meeting and becoming partners,” said Lynda Carthy, the head of a program called Myelin Project UK, which looks to end suffering for people with demyelinating diseases, “is one in three billion.”
Sadly, there is no hope the brothers can survive the disease. “There is no cure,” Carthy explained to the Daily Telegraph. “It will eventually end in death as the brain shuts down.”
And what of Lydia, the child Matthew fathered some 20 years ago? At first she was a bit confused by her father’s absence from her life, but she now shows compassion.
“Until he was diagnosed last summer, I hadn’t seen my dad since I was 13,” she explained to reporters. “I thought it was because he wasn’t bothered and it was actually a relief to find out it was because he was unwell.”
“Seeing how he is now…is very upsetting for me,” she added. “When I was growing up, he was a great dad. He was really hard-working and, at one point, had three jobs.”
Lydia recently gave birth to a child of her own, making Matthew a grandfather. Unless Lydia’s partner also happened to be a carrier of the rare disorder, the baby is expected to be fine.