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Giving ‘Hope’ to others

Health: Stephanie Magness started an annual boutique to fund research for Friedreich’s a

Posted: November 4, 2010 9:37 p.m.
Updated: November 5, 2010 4:55 a.m.

Magness puts together a raffle basket comprised of items donated by Trader Joe’s in Saugus for Stephanie’s Hope Boutique at Rio Norte Junior High on Nov. 13.

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Growing up can be awkward at times for just about anyone. For Stephanie Magness, of Saugus, it was particularly challenging.

“I honestly don’t remember a time when I didn’t have to consciously think about taking steps to walk. I would focus so hard on trying to keep my balance, it was taxing,” she said. “I just thought I was klutzy.”

At 12, after testing positive for scoliosis during a mandatory school screening, Magness was subsequently diagnosed with Charcot-Marie-Tooth, an inherited neurological disorder that causes victims to slowly lose normal use of their hands, arms, feet and legs.

When Magness’ health continued to decline over the years, she was ultimately given a new diagnosis at 23: Friedreich’s ataxia, a rare inherited disease that causes nervous-system damage and movement problems.

Currently, approximately 50,000 people in America have been diagnosed with Friedreich’s ataxia.

The news was devastating to the Magness family.

“Stephanie had dance lessons. She loved to read, but she never could rollerskate,” said Sharon Magness, Stephanie’s mother. “Still I wasn’t thinking my daughter had this terrible disease.”

Looking back to that time, Magness can be pragmatic — positive even.

“I believe God spared me the knowledge of my true diagnosis for those 10 years because I was not as emotionally able to handle it at 13 as I was at 23. For that, I will always be thankful,” Magness said. “Especially because, the future is so much more promising for people like me, with FA, now as opposed to 1994.”

Stephanie’s Hope
Now 29, Magness decided to help others just like her in 2006. Since then, Magness and her family have hosted the annual Stephanie’s Hope Holiday Boutique, which raises funds for the Friedreich’s Ataxia Research Alliance.

The national, nonprofit organization’s mission, according to its website, is “to marshal and focus the resources and relationships needed to cure F.A. by raising funds for research, promoting public awareness and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing F.A. and related diseases.”

“It’s safe to say we’re entering the treatment era, and that a cure is on the horizon,” said Sharon Magness, boutique co-chairwoman.

This year’s Stephanie’s Hope boutique will be held from 9 a.m. to 5 p.m. Nov. 13 at Rio Norte Junior High School in Saugus, and features dozens of vendors, as well as live music, a silent auction, an exciting “Twelve Days of Christmas” raffle and extensive bake sale.

“We’re blessed with really great vendors, many that have been with us since the beginning,” Magness said. “It’s become a huge community event that people are really happy to be a part of. It’s really humbling.”

The “Twelve Days of Christmas” raffle includes prizes such as: tickets to Universal Studios and a one-night stay at the Sheraton Universal; Knotts Berry Farm tickets; a golf foursome at Robinson Ranch; and passes to the Huntington Gardens.

In 2009, Stephanie’s Hope Boutique raised $7,000 and Magness is hoping to hit a higher target this year. “Since it’s our fifth year, $10,000 would be great,” she said.

Sharon Magness would like to raise something else, as well: awareness. “We’re thankful for all the opportunities God gives us to spread the word,” she said. “As a family, we couldn’t just sit on the sidelines and do nothing.”

In addition to the boutique, Magness’ family, including Sharon Magness; father, Carl Magness; and brother Keith Magness will participate in Ride Ataxia So. Cal., an 80-mile bicycle journey from Long Beach to Dana Point on Dec. 4 and 5.

Living with Friedreich’s ataxia

Initially embarrassed by her disease, Magness went to great lengths to hide her discomfort from friends and family. “It was so personal I didn’t want to open doors and let people see in,” Magness said. “I’m cool with it now.”

According to the National Institute of Health, Friedreich’s ataxia causes the spinal cord and peripheral nerves to degenerate and become thinner. The part of the brain that coordinates balance and movement, or the cerebellum, also degenerates to a lesser extent.

The nerve damage results in awkward, unsteady movements and impaired sensory functions. “You know how if you close your eyes, you can stand and not fall over? Well, I would fall over. It was crazy,” Magness said.

“It was like Stephanie didn’t know her place in space,” Sharon Magness said.

Magness began to walk with a cane, then finally had to switch to a wheelchair a few years ago. She rolls in the chair effortlessly, as if it were second nature, though her mother steps in sometimes when they’re out in public.

“Obviously, we’re different than most families in that my daughter has an incurable disease, but we don’t allow it to define us as a family,” Sharon Magness said. “We just have a wheelchair to push, which makes us look different right away.”

There’s a slight slur to her speech, but Magness’ dazzling smile still reaches to her sparkling blue eyes when she talks.

“Different is a good thing,” she said with a grin.

The future

As a girl, Magness dreamed of being a wife, mother, maybe even a supermodel. With her thin, lanky frame, striking features and shiny brown hair, she just may have done the latter had her health been different.

Magness began attending College of the Canyons in 2003, when she could still work and drive. Then things began to change.

“So much started going on physically, but I just wasn’t dealing with it, I was trying to ignore it,” she said.

She took a sabbatical from school, then enrolled in online studies at Virginia Regional University, graduating in 2009 with a bachelor’s degree in psychology and a minor in substance-abuse treatment and religious issues.

While she’s applied for several different jobs since graduation, Magness has not found employment. Her needs are different than most applicants: The facility would have to be local, as Magness doesn’t drive.

The search has not dampened her spirit, however.

“Jobs are hard to find for everyone,” she said. “I would love to work with kids with disabilities.”

When it comes to fun, Magness is like most women in her 20s. She loves to shop and go to movies and restaurants with her girlfriends. A diehard reader, Magness reluctantly admits to being a “Twilight” fan (Team Jacob, for inquiring minds), frequents live theater productions in Los Angeles and dabbles in web design.

For her 30th birthday, Magness plans to go sky diving. “I enjoy doing different things,” she said. “I try not to let my disability hold me back from doing. If I can, I will.”

Stephanie’s Hope Boutique, 9 a.m. to 5 p.m., Saturday, Nov. 13, 28771 Rio Norte Drive, Saugus. Entry is free and corporate sponsorship is welcome. For more information on the boutique or how to sponsor the Magness family for Ride Ataxia So. Cal., visit www.stephanieshope.com. For more information on Friedreich’s Ataxia, visit www.cureFA.org.

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