Siblings beat the odds, continue to fight for a cure for muscular dystrophy

OCEANSIDE — Sarah Carlson of Oceanside has exceeded expectations all her life. When she was diagnosed with muscular dystrophy, or MD, at 18 months old her parents were told she wouldn’t live beyond five years. Today she is a popular, 22-year-old biology major at Palomar College with plans of becoming a research scientist.
Younger brother, Scott, 20, also has MD. Like Sarah, he’s both tough and smart. Scott’s a junior in the aeronautical engineering department at UCSD with plans to go on to graduate school and pursue a career with Boeing or another defense contractor.
Currently, the siblings are recruiting members for Carlson & Co., their fundraising team, which is generating sponsors for the upcoming MDA Muscle Walk San Diego in Mission Bay on Feb. 27.
Donations will be used to find a cure for the disease. Of the 42 types of MD, a cure has only been found for one, pompe. The 2010 movie “Extreme Measures” starring Harrison Ford chronicled the story of a parent’s search for a researcher who ultimately found a cure for pompe.
Unfortunately, Sarah and Scott have spinal muscular atrophy.
“It’s an inherited disease that causes extreme muscle weakness and deterioration that worsens over time,” Sarah explained.
Moreover, spinal muscular atrophy is a form rarely found in siblings. Neither of their biological parents has the disease although they are carriers.
Despite having MD, Sarah and Scott made a commitment at a young age to lead a full life.
“We started looking for friends who had the disease, and support systems,” Sarah said. “That’s how we found MDA. I say we are doing alright. Some people think we are weak, but we are doing alright.”
Some of the greatest times Sarah and Scott remember were as kids going to MDA summer camp in the Cuyamaca Mountains every year. Local military personnel and firefighters added to the fun.
“A fire truck would come out,” Sarah said, smiling. “They’d cover our wheelchairs in plastic and have a competition with fire hoses.” Though they are too old to participate in the camp anymore, Sarah is quick to add that money generated from the 5K walk on Feb. 27 will make it possible for other children to attend.
These days much of Sarah and Scott’s efforts are focused on giving. Last year Sarah donated one of her paintings, which brought in $600 for MDA at an auction at the 2010 Outback Annual Charity Golf Classic at Maderas Golf Club.
Their mother, Lisa Carlson, says watching her children set and accomplish their goals like other young people has been a blessing.
“Sarah loves people and she loves to help people anyway she can,” she said. “She does lots of volunteer work for most anybody that asks her, not just for the MDA, but others as well. She may be disabled, but it doesn’t stop her from helping others.”
“Scott is busy in college, doing well, and loving every minute of it,” Lisa Carlson said. “Sometimes it’s hard for him just to make it to class, if he’s sick or something, but he never gives up. He is my definition of perseverance.”
To join Carlson & Co.’s team or make a contribution, visit www.joinmda.org/sdmusclewalk2011/CarlsonCompany.
“A sponsor can donate as much or as little as they want,” Sarah said. “We have 15 people so far on our team. The more people we have, the more donations we can get.”
This will be the 15th year the siblings have participated in the MDA Muscle Walk San Diego. The event will start at Crown Point Park in Mission Bay with snacks, entertainment and a warm-up. Registration begins at 8:30 a.m., the walk at 10 a.m. After wards, participants are invited to stay for more goodies, giveaways, awards and entertainment.
For more information, call (858) 492-9792. MDA is listed as a “Top-Rated Charity” by the American Institute of Philanthropy (www.charitywatch.org).

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