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The Founder Of MitoDiseaseIt may be true that I as webmaster, fund raiser, researcher and general dogs body have taken both the company registration and email address of Founder, it is equally true that without a little boy called Alex Lindemann MitoDisease would not exist.
Originally, my interest in mitochondria lay merely in the work of John Maynard-Smith with mitochondrial recombination. It was only after hearing the story of Alex, and subsequent research into his illness that lead to the foundation of this site.
Alex's CaringBridge website can be found here
In November 2008, Alex appeared on local television and in a newspaper with his story, reprinted here.
Reposted from Morning Call
Model train's freight: A sick little boy's dream
By Veronica Torrejón | Of The Morning Call
November 1, 2008
Five-year-old Alex Lindemann has a miniature world in his basement, with a model train that whistles through hills, across bridges, to a town where a black dog slumbers on a porch while a school bus whizzes by.
But in Alex's world, there are no central lines or needles -- and no trace of the condition, mitochondrial disease, that is slowly sapping his strength and killing off cells in his body.
''It's an escape for him; this is his safe place,'' said his mother, Katie Lindemann.
The train display was his No. 1 wish, courtesy of Dream Come True, a nonprofit organization in the business of doing just that for children like Alex, who is facing an incurable and progressive disease.
His display, which stretches 20 feet across, was assembled with great care over the last several months by a man who retired from his Palmer Township hobby store in April and found a new calling as a volunteer.
His gift of time has meant more to Alex than he'll ever know, say his parents. The way Alex's mother tells it, Alex wished for a train and got a friend in the bargain.
''I think he's a godsend,'' she said of Philip Klopp. ''God always puts people where they need to be.''
Klopp, 61, a train enthusiast since childhood, had just retired as owner of Hobby Hangout & Craft Center on William Penn Highway in April when a man from Dream Come True asked if he knew anyone who would set up a train display for a sick child.
''I said, 'I'll be retiring soon, I'll do it,''' said Klopp.
He was given a $5,000 budget, which he managed to stretch with his wholesale discount and donated items.
Alex's train display has all the bells and whistles: smoke, lights and a camera attached to one of the engines that relays images to a television atop the display. The entire set is operated by remote control so Alex can sit in his wheelchair and play when he can no longer reach the panels.
Klopp quickly bonded with Alex over their love of trains. He set up the display and explained each piece to Alex, who played alongside him.
''I don't have kids,'' said Klopp. ''Although we sometimes act like kids with our model trains.''
''Sometimes I wonder who has more fun down here, Philip or Alex,'' Katie Lindemann jokingly said.
For Halloween, Alex got a blue-and-white-striped engineer's cap, a red bandanna and a stopwatch. Alex, who seems much older than his 5 years, corrects his parents when they say he's a train conductor.
''He's a trainmaster,'' said his mother. ''He says the trainmaster is in charge of everything,'' rails included, while the conductor oversees the train itself.
Alex anxiously awaits the days Klopp comes to set up more of the display, still a work in progress. Once, when Alex came home from the hospital, he was unable to walk and his parents couldn't get him to smile. They pulled into the driveway of their home to find Klopp's car there, and watched Alex's eyes light up. They carried him into the basement, where he summoned the strength to stand and play with Klopp and the train.
''It's just amazing to watch the bond between them,'' said Katie Lindemann.
At one point, Klopp asked the Lindemanns if they wanted him to speed up the setup process. They declined, realizing how precious the time was that Alex had to spend with his new friend.
Alex's love of trains was inherited, in part, from his father, Steve, whose own model train still sits in his parents' basement in Cleveland. When the Lindemanns made the decision to participate in the Dream Come True program, the choice for a train display came easily. The harder choice was opting to participate at all.
''It's a hard decision as a parent to say your child qualifies for a dream,'' said his mother.
The condition Alex battles is mitochondrial disease Complex I, a chronic genetic disorder that occurs in about 1 of every 4,000 people when the mitochondria, the ''engines'' of their cells, fail to produce enough energy. The Lindemanns believe their 1-year-old daughter Lauren is also afflicted with the condition.
Alex gets treatment at the Alfred I. Dupont Hospital for Children in Wilmington, Del. In the lobby is a train set that Alex is fond of watching from his wheelchair.
When Alex passes away, his parents intend to donate his train display to the hospital or to the Ronald McDonald House where they stay when Alex is hospitalized. The set is built so it can be moved one day.
''We want his dream to live on,'' said Katie Lindemann. ''We know how much joy it's brought him.''
Television News Video
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