Events set to aid 9-year-old Canton boy with rare illness
by Joshua Sharpe
jsharpe@mdjonline.com
April 03, 2013 11:59 PM | 2178 views | 2 2 comments | 5 5 recommendations | email to a friend | print

Dylan Mahoney, 9, is the youngest of only 50 people in the world with Loeys-Dietz Syndrome, his mother, Monica Schmidt, said. This has spurred a few Cherokee County residents to take on the task of helping Dylan pay for his care by planning several events in his name at the Ball Ground Masonic Lodge on Saturday. <br>Special to the Tribune
Dylan Mahoney, 9, is the youngest of only 50 people in the world with Loeys-Dietz Syndrome, his mother, Monica Schmidt, said. This has spurred a few Cherokee County residents to take on the task of helping Dylan pay for his care by planning several events in his name at the Ball Ground Masonic Lodge on Saturday.
Special to the Tribune
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A full day of events will be in Ball Ground on Saturday to benefit a 9-year-old Canton boy who has the distinction of being the youngest person on Earth with Loeys-Dietz Syndrome, a genetic condition which makes him prone to aneurysms, kidney issues and, as a result, soaring medical costs.

Monica Schmidt said Friday her son, Dylan Mahoney, is the youngest of just 50 people in the world with LDS.

The condition is so rare, Schmidt said, that only one of the nine doctors her son sees regularly knew what it was before meeting him. Dylan also sees Dr. Harry Dietz, a specialist with Johns Hopkins University and Hospital, and the namesake of LDS.

Since Dylan was diagnosed in April 2012, Schmidt said it’s been one problem after another.

A mass was found on one of his kidneys, he was diagnosed with a condition in his blood vessels and he was discovered to have several aneurysms: one in his head and two near his heart in his aorta, Schmidt said.

Besides being a grave card to be dealt, she said LDS is a costly condition to have.

“His genetic testing alone was $10,000,” Schmidt said. “And insurance only paid the $87 for the needle prick.”

The costs are only expected to keep climbing as time goes on and Dylan undergoes more testing and surgeries.

This has spurred on a few county residents to take on the task of helping Schmidt fund his care by planning several events in his name at the Ball Ground Masonic Lodge this Saturday: a 5K run at 8 a.m. and a barbecue lunch and silent auction from 12 to 5 p.m.

Schmidt said Dylan will soon have part of his aorta replaced to combat the two aneurysms on his aorta and, eventually, because of the dangers associated with aneurysms in the aorta, it will have to be replaced entirely.

An example of the severity of the consequences to such aneurysms, Schmidt said Friday, is “If Dylan ever had a blow to the chest, we would have about a 20 percent chance.”

It was the middle of Dylan’s football season when he was diagnosed, she recalled, thankful such a blow never found him on the field.

Before his condition was discovered, Schmidt said she hoped Dylan could help look after his two brothers, a 5-year-old with autism and a 14-year-old with Aspersers Syndrome, a more mild form of autism.

“I told him ‘you’re gonna be that brother that’s gonna take care of the others,’“ she said.

But all that changed with the diagnosis.

At the time, it seemed Dylan was fine, but when his father, Fred Mahoney, was diagnosed with LDS, a doctor suggested Schmidt have him checked out, since the condition is genetic and, despite how things seemed, he was in fact afflicted.

Schmidt said she was shocked.

“You look at Dylan and he looks like a normal, healthy 9-year-old,” she said. “But inside he’s like a ticking time bomb.”

Dylan has since been taken out of his football program for his safety.

But Schmidt said he hasn’t let his condition keep him from being for the most part like any other 9-year-old.

He’s recently joined a bowling league and continues to attend the Boys and Girls Club, though he can’t participate in as many activities as he once did.

He was also tapped a few months ago by the Make a Wish Foundation to have a wish granted.

Schmidt said at first when she asked her son what his wish would be he said he’d like to go to Japan. Then he changed his mind and said he wanted a waterbed.

Schmidt wasn’t enthusiastic. A waterbed in her home of three young boys might spell disaster, she said.

But, luckily for her, she said she didn’t think waterbeds were still made, and Dylan has moved on from that dream.

“Now he’s on going to Hawaii to see the volcano,” she said.

No matter where Dylan’s wish takes him or how much money is raised this Saturday, Schmidt said she and the rest of her family just want to keep going about their lives and keep finding small things to keep them moving.

“Our doctor says we have to live our lives day to day, and we have to have something positive to look at,” she said. She said that’s just what they’re doing.
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elaine76
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April 05, 2013
I have two children that were diagnosed with Loeys Dietz in Fall 2005. It was through my own research that I found out about it. They saw Dr. Dietz at John Hopkins and were diagnosed. Our insurance covered everything but our deductibles. The diagnosis is overwhelming and while there can be great risks, some are not born with as many complications as others. Even within the same family, a person's symptoms, and degree of severity can be completely different. I have seen/known of many diagnosed as infants and toddlers. I have three great nephews diagnosed and they are all between the ages 3 and 8. This disorder is a connective tissue disorder, in the same family as Marfan's & Ehler Danlos Syndromes. I happen to believe that it is not as rare as has been said but just that it was only named as a new disorder/syndrome in 2005, (before that, a person would have been diagnosed with Marfan's or Ehler Danlos). Most insurance covers everything but the deductibles and as for there being only 50 cases, you can go to the Loeys Dietz website or to their facebook page and see that there are many, many more than 50 people that have been diagnosed, (there are six people in my family alone that have been tested and diagnosed). I will concede that not many doctors know about Loeys Dietz, as there are many rare disorders/syndromes, but the information, networking and the research from Dr. Dietz and his team has helped to spread the news. If you go to the loeysdietz.org website, you will see that about 500 had been diagnosed and you will see pictures of some children as young as 1yr. old that have been diagnosed. Perhaps the MDJ reporter should research the topic himself as there is a lot of misinformation here.
Christine321
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April 05, 2013
I wish you all the best for your fundraiser. I too have LDS. I wanted to let you know though that many children have been diagnosed with the condition. As it is genetic people have it from birth--please visit the Loeys Dietz Foundation website.

All the best.
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