Page 12 - 2019 Fall CMTA Report

WHY I FUNDRAISE:

Whitney Wright

hen Whitney Wright In middle school,
met CMTA goodwill it became evident that
ambassador George Whitney’s CMT was get-
Ouellette at the ting worse. She recalls:
W Franklin County Fair in “It was pretty hard
early August, she knew from his because I was starting
Vermont Cycle 4 CMT hat that middle school in a differ-
she had found a kindred soul. She ent town with none of my
had met people who had family childhood friends, and no
members with CMT before, but one knew how I walked
George “had support that I never and what my condition Whitney Wright was
diagnosed with
knew about,” she says. George put was. I grew up with the CMT when she was
Whitney in touch with his sister, kids in my elementary 18 months old.
CMTA Board Member Elizabeth school so they thought
Ouellette, and the 17-year-old nothing of it. However, at
quickly enlisted as the CMTA’s this new school I was asked ques- If you’d like to donate to
newest fundraiser. tions, which was foreign to me.” Whitney’s fundraising campaign,
Whitney was diagnosed with She soon learned that “CMT isn’t visit www.cmtausa.org/whitney.
CMT at 18 months old. She was a terrible thing to be embarrassed As The CMTA Report went to
able to play sports like basketball about” and that her new class- press, she had raised $3,550.
and softball until she was 11 when mates were “understanding and
she realized that she was different welcoming” when she explained it
from the other kids. She was upset to them. weeks. She says that the result was
about it, but she adapted quickly As Whitney’s condition and worth the pain, though, and that
and became the girls’ basketball pain from hip dysplasia worsened, she “can’t imagine still having hips
team manager, a position she’s her family’s search for a doctor like that.”
held ever since. The experience became more urgent. With the Along with CMT, Whitney
taught her how not to give up and cartilage in her hips virtually gone, also has retinitis pigmentosa, a rare
how not to let her CMT affect the constant pain was “like gravel and incurable eye disease that
how she lives her life. rubbing together” as bone scraped affects the rods and cones in her
bone. The search for relief eventu- eyes, leaving her unable to see in
ally led to Dr. Ernest L. Sink at the dark or to see fine detail.
the Hospital for Special Surgery in Today, Whitney gets around
A SPECIAL THANKS TO ALL New York City, who performed with the help of a walker or a
scooter or a friend’s arm. She tries
two surgeries on Whitney when
FEDERAL EMPLOYEES! she was 15—a periacetabular to maintain the muscle she has by
osteotomy, a surgical procedure to swimming in an endless pool. A
hank you very much for your support of the try and preserve the hips, and a rising senior, Whitney wants to go
T CMTA through the Combined Federal femoral osteotomy to correct to college outside of her native
Campaign. By the end of August 2019, deformities in the femur. Vermont and become either a
contributions amounted to more than $11,000, Recovery was rough, Whitney speech pathologist or a forensic
allowing us to continue to meet our mission of says. She couldn’t bear weight on investigator. “It is tough to have
improving the quality of life for those with CMT her hips for six to eight weeks and CMT sometimes, but you need to
by providing resources and information, didn’t go to school for a month, be able to accept it—which I have
increasing awareness about which she hated because she loves done—and persevere,” she says.
CMT and funding research for being around her friends. She also A cure for CMT “would be life-
the development of treatments had to do physical therapy for a changing,” the new fundraiser
for all types of CMT.
few months to gain strength back adds, both for herself and for
after being immobile for a few others like her. h

12 THE CMTA REPORT FALL 2019