A CLOSER LOOK

For more information on Marfan syndrome, visit www.marfan.org

Michelle Smith, 15, loves country music and knows all the words from the musical, “Rent.” She is a member of her high school Key Club and dreams of a career in fashion. Smith also has something in common with Mary, Queen of Scots, Abe Lincoln and Charles de Gaulle. She has Marfan syndrome.

According to the National Marfan Foundation, Marfan syndrome is a genetic disorder of the connective tissue. Symptoms include a tall, thin body; long limbs and fingers; and problems related to the heart and the eyes.

After years of medical problems and no answers, Smith was diagnosed with Marfan syndrome in 2003. The cheerleader and gymnast, who is just over 6 feet tall, had to give up sports and start having her health monitored by 15 different doctors. Though Smith does not have the most severe symptoms of the disease, she needs to have her heart checked at least once a year – the syndrome’s effect on the vital organ can be fatal.

But physical restrictions and dozens of yearly appointments haven’t slowed down the Scarborough High School freshman. She has turned to new hobbies, including pageantry and volunteer work, particularly for Marfan syndrome. For her commitment to increasing public awareness about the syndrome, the National Marfan Foundation honored Smith with a Silver Service award. The foundation gave out 18 awards this year to people all around the country as part of its 25th anniversary celebration. Smith was the youngest winner by eight years.

“I don’t have that severe of a case,” Smith explained, “so I feel like I was chosen to do this, so I can spread the word.”

Smith started entering pageants in order to spread awareness about Marfan syndrome – her mother wouldn’t have let her enter otherwise.

“To say they took me in kicking and screaming is saying it mildly,” Blue Smith explained. But the pageants proved worthwhile, not only in giving Smith a platform from which she could speak about Marfan’s, but also in boosting her social studies grade. In order to prepare for questions asked at pageants, Smith has to stay on top of current events. Her social studies grade jumped from a C to an A+.

Smith has also had the opportunity to meet several celebrities, including country singers Carrie Underwood and Don Campbell and supermodel Kathy Ireland. Smith would like to start modeling more herself, but her mother thinks she’s too young. Blue Smith makes sure all of the pageants that her daughter enters are age-appropriate and are serious about hearing her platform.

In 2006, Smith won the title of Miss Teen Cumberland County International. Her platform focused on a campaign that she started called Hands Saving Hearts, for which she teaches people about a simple self-screening test called the “positive thumb and wrist sign” that could lead to early detection of Marfan syndrome.

Smith’s next projects include sending e-mails to school nurses and doing more presentations through her high school Key Club. Because February is Marfan Awareness Month, Smith will be busy attending events over the next few weeks, including fashion show fundraisers in Boston and New Hampshire.

Though Smith gets paid to participate, she always turns the money right over to the charity.

“It makes you feel good,” she said.

Michelle Smith, 15, holds her award for public awareness from the National Marfan Foundation. Smith was diagnosed with Marfan syndrome in 2003.Scarborough teen not slowed by Marfan syndrome Michelle Smith, 15, flips through a scrapbook of her work with the National Marfan Foundation at her home in Scaraborough. Smith was diagnosed with Marfan syndrome in 2003 and was recently awarded for her volunteer work.