Tony and Christine Clark spend their days picking up trains and breaking up fights. Their two sons act like typical children, learning to use utensils and getting up throughout the night. Except Tony and Christine’s kids aren’t kids.
Matthew is 39. Michael is 42. Both are aging backwards, much like the 2008 film “The Curious Case of Benjamin Button.”
But these boys got to grow up, first. Tony and Christine already raised their sons. Both grew up, got married, and settled down. Matthew was worked in a factory and raised his teenaged daughter. Michael served in the Royal Air Force and later became a cabinet maker. Tony and Christine washed their hands of parenting and moved to Spain to retire.
In 2007, the family’s world began to unravel. Both men stopped returning their parents’ calls and texts, and their lives began to fall apart.
Michael finally resurfaced in soup kitchen, where he was referred to medical experts by social workers. After an MRI scan, he was diagnosed with terminal leukodystrophy. Soon after, Matthew received the same diagnosis.
Leukodystrophy is an extremely rare genetic disorder in which the Myelin — or white matter — in the nervous system, spinal cord, and brain is attacked. It causes sufferers to essentially “age backwards,” as they experience a disintegration of physical, mental, and emotional states.
Now, the brother spend their days in the care of their parents, who are in their 60s. They play Mr. Potato Head, fights over board games, and play outside.
In rare lucid moments, they struggle to understand how their lives have unraveled so dramatically.
In the U.S. alone, about 1 in 40,000 children are born with a form of the neurodegenerative disease, according to Dr. William Kintner, President of the United Leukodystrophy Foundation. Some forms of the disorder are potentially treatable if discovered in the earliest stages. Not all cause an emotional regression along with physical. The Clark brothers, however, are unlikely to be cured.
“It’s very difficult to do anything once progression has occurred,” Dr. Kintner tells Yahoo! Shine.
The Clarks moved back to the UK from Spain to care for their sons. Earlier this year, Matthew became a grandfather when his daughter gave birth to a son. The news was bittersweet, as the Clark brothers’ mental age creeps steadily backwards.
“There’s no return to them being cute little boys,” said Christine, who regularly manages their tantrums and fights over Monopoly. “They’re big strong men—and that presents a quite different set of problems.”
The brothers also seem to be deteriorating much faster than they grew. Now, even their physical strength began deteriorating.
“A few weeks ago, they could still manage with a knife and fork, but now that’s getting too difficult for them—they get the food onto their forks, but somehow it all falls off before it reaches their mouths,” she said.