Galapagos wish granted for 14-year-old with Duchenne disorder

kjahner@newsobserver.comSeptember 9, 2013 

As a 14-year-old standing roughly 5 feet tall, Charlie Riesebeck has been dwarfed before, but rarely the way he was last month during his trip of a lifetime to the Galapagos Islands and approached a giant tortoise.

“Just absolutely massive. They were even bigger than I thought,” Riesebeck said of the 800- to 900-pound turtles.

Riesebeck and his family returned from their weeklong vacation on Aug. 19, a trip provided by the Make-A-Wish Foundation to fulfill a dream for Charlie, who has Duchenne muscular dystrophy.

Those with Duchenne typically experience lifespans in the 25-year range. Riesebeck, who can still walk, has already distinguished himself as atypical, though, because most end up in wheelchairs by age 12. But Riesebeck knows his clock is ticking faster than those of most people his age.

“It was in a lifetime trip that meant pretty much the world to me. Now I guess I can say that my life’s dream can be fulfilled, my life is kind of complete,” said Riesebeck, who started this year as a freshman at Garner Magnet High School.

‘Awestruck’

The trip proved memorable for the entire family.

“Awestruck, if I had to put it into a single word,” Riesebeck’s father, Chuck said. “There’s a phenomenal variety of things you can see that you can’t see anywhere else, from the vegetation to the wildlife. It was incredible.”

Father and son expressed amazement at how comfortable animals were around humans, allowing them to approach. Chuck said the family took about 2,400 pictures. He also said that a good number of the ones he took showed Charlie right next to the animals.

“The animals would just let you walk right up to them,” Charlie said. “A sea lion swam right up to us; we got that on video. Pretty much all of the animals were amazing.”

Charlie had wanted to visit the Galapagos since he was a young boy. He had to wait, first to reach the age required for the foundation to fund travel (11 years old) and then for logistics and funding to come together. From his and his family’s perspective, it was worth the wait.

“It was his dream come true. You don’t get to see that happen all that often. Not on that scale,” said Chuck, who works in natural-disaster restoration after 27 years with Siemens.

He also praised Make-A-Wish and said the trip was very well-run and comprehensive.

After the family returned, the foundation invited Charlie to speak at the North Carolina CEO Forum, an event Make-A-Wish sponsored and from which it benefited. He gave a speech expressing his gratitude for the organization to help drive donations and auction bids. Former Secretary of State and retired four-star general Colin Powell, Cisco CEO John Chambers and Gov. Pat McCrory also spoke at the event.

“They gave him a standing ovation. Not bad for a 14-year-old giving a three-minute speech,” Chuck said. “He told them ‘I am a 14-year-old boy with Duchenne muscular dystrophy. Now I’m a happy 14-year old boy with Duchenne muscular dystrophy.’”

Fighting Duchenne

Doctors diagnosed Charlie early, before his second birthday; most parents learn their child has the disorder at age 5 or 6. His condition has not deteriorated as rapidly as the average child with the disorder – “not a disease,” as his father says to correct anyone who misclassifies the condition.

One in 3,000 to 5,000 males suffers from the disorder characterized by rapidly deteriorating muscles. Treatment stunts growth, explaining his stature.

Charlie does not like to talk about illness. Mentioning it at the CEO Forum by name was unusual; before the trip his dad had said he doesn’t even say the words “muscular dystrophy.”

He takes a combative stance against his limitations, expressly refusing to allow them to beat him. While he walks with a hitch, can’t play sports and struggles with stairs, he otherwise maintains a normal life. The average person diagnosed with Duchenne experiences breathing difficulties and/or heart disease by age 20 and eventually dies about five years later, but Charlie remains determined to beat the average.

If his ability to forestall the worst of the symptoms and his fortune in acquiring his dream provide any indication, that would appear to be a safe bet.

 

Jahner: 919-829-4822; Twitter: @garnercleveland

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