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Real Benjamin Buttons Brothers: Matthew and Michael Clark are Aging Backwards (1160L)

Notes on my thoughts,

They stopped returning their parents' calls and texts, and as the Clark brothers'

reactions and questions as I

conditions developed, their lives fell apart.

read:

Michael surfaced in a soup kitchen, and was referred to medical experts by social

workers. After an MRI scan, he was diagnosed with the incurable degenerative disorder.

Soon after, Matthew received the same news. 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. While some

forms of the disorder are potentially treatable if discovered in the earliest stages and not

all cause an emotional regression, the brothers are unlikely to be cured. "It's very

difficult to do anything once progression has occurred," Dr. Kintner states.

As of April, when the Clarks were first written about in the British press, their mental

age was 10. "We will be out walking and things which might interest a toddler interest

them, the other day we were walking home when Michael saw a balloon and pointed it

out to us," father Tony Clark, told The Telegraph last spring. Today, the brothers are

even younger mentally. "Just like small children, they wake up a lot during the night,"

mom Christine said in an interview published in The Independent this week. "I was up

seven times with them last night."

After learning of their diagnoses, Tony and Christine returned to the UK and moved in

with their sons. Their daily struggles as a family have been chronicled in a British

documentary, "The Curious Case of the Clark Brothers," airing Monday in the UK.

Earlier this year, Matthew became a grandfather, when his daughter had a son. But the

news for the family was bittersweet, as the Clark brothers' mental age continued to

creep 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."

More recently, 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. Now, walking is the next hurdle; Matthew is already confined to a

wheelchair.

"The likelihood that they're on a terminal course is fairly certain, but who knows?" says

Dr. Kintner, who is familiar with the Clark case but didn't meet the brothers. "If they

were citizens of U.S., we'd try to get them to the National Institute of Health for

diagnostic work, but in the UK the system is different. There is no comparable

organization with genetic diseases, so it's a little more difficult there."

Dr. Kintner estimates there are several million cases of one of the estimated 40 types of

leukodystrophies in the U.S., but an exact number is hard to pinpoint. The different

forms of the disorder are still being identified and tests for each known type are still

being developed. "It's going to take a long time," says Dr. Kintner. "I hope in my

lifetime I see a cure for some of them."

Weiss, P., Real Benjamin Buttons brothers: Matthew and Michael Clark are aging backwards. Healthy Living. November

26, 2012.

Real Benjamin Buttons Brothers: Matthew And Michael Clark Are Aging Backwards (1160l) - Middle School Reading Article Worksheet Page 2

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