Sandor and Song Remain Upbeat Despite DMD

Posted on November 27, 2012 by

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You may not know his face, but you have probably heard his name. Seventh grader Aidan Sandor is a student at Fleetwood Area Middle School currently battling  Duchenne Muscular Dystrophy (DMD), an inherited disorder that involves muscle weakness that worsens over time and which is most commonly diagnosed in adolescent boys.  Sandor was diagnosed in 2004.

“I had never heard the word Duchenne before,” mother Maria McDonnell recalled on her blog, “Aidan’s Fund.”

On this website, friends can find Sandor’s Story, a compelling reminiscence of how the discovery of his illness arose as well as the difficulties and triumphs after his diagnosis.

In September of this year, the A.J. Fund held its first annual 5K run/walk to raise awareness as well as funds for some of Sandor’s expenses.

Amanda O’Donahue, ’15, a home-schooled student who resides in Fleetwood Area School District and who is a member of Fleetwood girls’ cross country was one of the 80 people who participated in the 5K fundraiser.

“It was a really fun experience. It had a great atmosphere; everybody was pleasant and happy to be there,” O’Donahue said.

Sandor has touched many people’s lives, including one of high legislative power, Chairman Thomas R. Caltagirone.

In 2010, Caltagirone urged the Pennsylvania House of Representatives to pass a resolution declaring the week of May 24th to be considered as “Duchenne Muscular Dystrophy Awareness Week.”  This was before meeting Sandor and his family.  Caltagirone also wanted to honor the work of the PPMD (Parent Project Muscular Dystrophy), the largest non-profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy.  PPMD focuses on finding a cure for this terminal disease.

“In my job, I meet thousands of residents of this great state, and hear of their compelling stories, but meeting Aidan and his family has forever changed my life. This young man is full of dreams, and passion, and energy, and deserves the same chance at happiness we all do. It is obvious to me that Duchenne is not going to keep him down. Therefore, it is our obligation to educate ourselves about devastating diseases like Duchenne, so that we can help save the lives of our children and children’s children. Aidan deserves the chance to fulfill every one of his dreams,” Chairman Caltagirone said in a prnewswire.com interview in May 2010.

Also in 2010, Fleetwood Area Middle School arranged a day dedicated to the awareness of Duchenne by showing the movie Darius Goes West. This documentary was filmed by Logan Smalley about his friend, Darius, a teenager afflicted with Duchenne who embarked on a 7,000 mile road trip across the United States in the summer of 2005.

Aidan and father Tom Sandor were participants in helping to promote this film, which ended up winning countless film festivals across the country in 2007.

All proceeds from the film went to ‘Charley’s Fund.’ The filmmakers had originally hoped the film would bring in around $70,000 for DMD research, but by June of 2009, the film had raised $2 million.

“Aidan is hopeful for a cure, but he has never let DMD define him or bring him down. Seriously, I have no idea how he does it, but he accepts and even welcomes things that would knock most of us off our feet,” McDonnell said.

Sandor is constantly accompanied by his service dog, Song, who is always by his side.

“The two are a pair and not easily separated,” Susan Shelly, Reading Eagle correspondent, said in her February 2010 article titled ‘Specially trained dog helps Fleetwood boy cope with symptoms of Duchenne Muscular Dystrophy.’

Sandor, a handsome, brave, and upbeat young man with a smile that makes others smile loves everything Pokémon and has dreams of becoming a Zookeeper.

Sandor took his last steps on 28 November, 2011, and has since been confined to a power chair.

“We take it one day at a time because that’s all we can do,” McDonnell said. “But you know what? It’s a pretty good life.”

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