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Marlborough woman strives to bring awareness to genetic disorder

Shannon Lynn Needler  (Photo/submitted)

Shannon Lynn Needler
(Photo/submitted)

By Bonnie Adams, Managing Editor

Marlborough – Shannon Lynn Needler, 25, is a positive and upbeat young woman. A graduate of Hudson High School, she is now a certified pre-school teacher and hopes to find employment in that field soon. She enjoys time with friends and family and doing many of the things that most people her age enjoy doing. This, in spite of the fact that she lives every day with a particularly daunting challenge that has thrown her curveballs since infancy – the genetic disorder  neurofibromatosis (NF).

According to the non-profit organization, Children’s Tumor Foundation (CTF), NF causes tumors to grow along various types of nerves anywhere in or on the body.  Most cases are mild but in some severe cases the disorder  can lead to disfigurement, blindness, skeletal abnormalities, dermal, brain, and spinal tumors, loss of limbs, malignancies, and learning disabilities.

In Needler’s case, she has had surgery 78 times, including the amputation of her right leg when she was nine years old and has had to deal with over 300 tumors. She has also had problems with her vision and is always in some degree of pain.

“Thankfully I do have a really high pain threshold,” she said. “But I try to live my life the best I can and not let this define me.”

Losing a leg at an early age was definitely a “completely life changing experience,” she said, “but I didn’t allow that to slow me down. In fact it gave me opportunities I would not have been able to do if I still had my leg in a brace. I was then able to ride a bike, skate and do gymnastics.

“Being in a brace really stopped me from being able to do gymnastics and that as a young girl was heart-breaking. All my friends were doing it! I can remember attending my first gymnastics class scared of what people may think of me… but I got in there and never felt more confident.”

Needler is now committed to helping to raise funds for NF research. As such, she will be co-captain of the team, “Shannon’s Angels,” that will participate in the Children’s Tumor Foundation NF 5K Walk in Boston, Saturday, June 15.

Joining her will be her mother Wendy Gelinas, grandfather Bert Discher, aunt Kimberlee Discher, brother Casey Gelinas, and sister Samantha McNamara.

“[Neurofibromatosis] is not something you hear of usually,” she said. “There is no cure nor are there effective treatments for NF, and that is why I am walking.  I’d love to bring awareness to this.”

To donate to Shannon’s Angels, visit http://www.ctf.org/NF-Walk/, click the Boston walk, click “support a participant” and then type in “Shannon Needler” to go to her personal page.

Checks can also be sent to: Children’s Tumor Foundation, Attn: Boston NF Walk, 95 Pine Street, 16th Floor, New York, NY  10005. Checks should be made out to Children’s Tumor Foundation, with “Shannon’s Angels/Boston NF Walk noted in the memo section.

Short URL: http://www.communityadvocate.com/?p=36085

Posted by on May 25 2013. Filed under Byline Stories, People and Places, This Just In. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry

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