NEW HARTFORD - "In some ways, I feel that Matt died to save Michael," said Sharon Nasutovicz.

She is talking about her twin sons - Matthew died of complications due to Marfan Syndrome when he was just 25-years old, and his brother, Michael, has had to endure several major surgeries.

It was about 20 years ago when Sharon first found out her kids may have Marfan's.

"The doctor started looking at his legs and arms and other things, and I thought 'hmmm. This is kind of strange.' And he asked me if I had ever heard of Marfan Syndrome, and I said no, what is it?"

She says the diagnosis was terrifying for her and her family.

"I just wasn't going to believe that anything bad was ever going to happen, that we would get through this, that we would deal with it."

Doctors say the most serious complications occur in the cardiovascular system.

The aorta of the major blood vessel carrying blood away from the heart progressively enlarges. If the aorta gets to a critical size, about 5 centimeters, then it's at risk to tear and rupture, causing sudden death.

Other, more visible signs of Marfan include a long, narrow face, long fingers and toes, severe curvature of the spine, and poor vision.

But research has come a long way.

For the first time, someone with Marfan Syndrome might anticipate never requiring surgery for an enlarged aorta. They might anticipate not having skeletal features or lung problems.

And as Sharon and her family are preparing for the 7th anniversary of Matthew's death, they're hopeful that someday there just may be a cure, thanks in part to the "Hang-a-Heart Campaign."

"We think of him every day. We honor him every day. And although I wish he would have survived it. I do think he is always watching over Michael, i know he is."

For more information, visit www.marfan.org or call
1-800-8-MARFAN

Businesses Participating in the Hang a Heart Campaign
-Chanatry's Supermarket
-Daylight Donuts, New Hartford
-DeFazio's Pizza, New Harford
-Four Seasons Pizza
-Jay-K Lumber
-kirby's
-Piggy Pat's BBQ
-Tony's Pizza, Washington Mills
-Participating Walgreens
-Symeon's Greek Restaurant
-Gianni-Lauryn Hair Studio
-Participating Hannafords
-Panera, on Wednesday February 13th, from 5:00 p.m. - 7:00 p.m. 15% of all sales will be donated to NMF