By Jean DePlacido
---- — When Rich Tabbut was a child, he didn’t understand why his mother was different from the other mothers in his neighborhood. Later, he came to realize she was a very courageous woman suffering from a rare congenital condition called Sturge-Weber Syndrome.
This Monday, Tabbut will run the Boston Marathon in honor of his mother and for his Wicked Running Club out of Salem. Since joining Wicked, the lifelong Beverly resident has become very involved in running for charities and helping disabled people.
Sturge-Weber Syndrome, or SWS, occurs in only one out of every 50,000 births — and there is no cure. The most common sign of SWS is a bright-red port wine stain that covered half his mother’s face and extended down her chest, but there are other far more serious effects that tend to worsen with age. His mother also had polio as a child.
“When I was younger I didn’t realize how many problems she had,” said the 54-year-old Tabbut. “She stayed in the house a lot and couldn’t do so many things that others took for granted. My parents kept to themselves most of the time, and I was a very shy kid.
“As an adult, it hit me how much courage she had, and now I want to help disabled people. I’ve been running for 40 years now beginning when I was in junior high. I’m not all about doing races in a fast time; running for charities has become more important as I get older.”
The Beverly resident was fortunate to receive one of two invitational entries for the Boston Marathon, given to his running club as a reward for the terrific job they do each year at the mile 17 stop along the marathon route. Names of club members planning to run the marathon, who met certain criteria, were placed in a hat and randomly chosen. Tabbut and Amber Woolfenden were the lucky winners.
“I’ve been training all winter,” said Tabbut, who will run Boston for the third time, but first since 1996. “I’ve run seven marathons, and I’m into a lot of charity runs. Wicked Running Club has really changed my life; the club does so much great work to help others and provide scholarships as well as assistance to local high schools.”
The late Hilda Thornhill Tabbut left her home and family in Montreal in the 1950s to come to Boston and start a new life. She worked in a department store and later married Tabbut’s father Harold, a World War II veteran attending Wentworth Institute. They moved to Beverly and raised two healthy children.
As a teenager, Rich Tabbut felt hurt when a couple of neighborhood kids teased him about his mother, who rode on a large tricycle for exercise. When he became an adult, he realized what she had to go through to fight SWS. She was legally blind, had seizures that became more severe as she grew older, learning disabilities, glaucoma, severe headaches and paralysis.
When she was in her 60s, she began to have strokes and became house bound. Rich’s dad cared for her day and night until she had to be placed in a nursing facility. Harold passed away after a massive heart attack, and in 1994 Hilda died.
There is no cure for Sturge-Weber, and Tabbut hopes the modest sum he is raising will help improve the quality of life for those afflicted.
“When my mother was growing up nobody talked about things like SWS,” said Tabbut, who says his wife Maureen and his daughter Liz (a student at UMas Amherst) are his inspirations. “She wore heavy makeup to cover the wine stain on her face, but she had other things including a weakness on one side. Now they have laser surgery, but it wasn’t available in those days. Nobody really understood why the mark was there. I look back and think how brave she was to come to a city where she didn’t know anybody.
“I’ve been inspired by Dick and Rick Hoyt. (Dick pushes his son Rick in a wheelchair in marathons, and a statue of them has just been put up at the start of the Boston Marathon in Hopkinton). The Hoyts started a program called Angels and Captains where you team up with a person in a wheelchair and push them in the race. I’ve done a 10K, 5K and recently the New Bedford Half-Marathon on St. Patrick’s Day. Let me tell you, it’s a big challenge pushing a wheelchair for 13 miles, but what a wonderful program.
“Things have changed so much since my mother was young when they didn’t have anything like that.”
To donate to Rich Tabbut’s SWS cause, please visit www.firstgiving.com/fundraiser/richardtabbut.2013BostonMarathon
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