She was just like every little girl.  She loved to dress up, play with Barbies, dreamt of getting married and living what would seem to be the “ordinary life,” but at the age of 12, Stephanie Magness discovered that her life was anything but ordinary.
After a screening of scoliosis in the seventh grade, Stephanie’s life consisted of many doctors visits to follow.  Finally, 10 years later, Stephanie was diagnosed with Friedreich’s Ataxia(FA), a rare degenerative neuromuscular disease affecting one in 50,000 people in our country.
“I have to admit that I wasn’t at all prepared for learning about the severity of my new reality,” stated Stephanie.  “A wheelchair, severe loss of coordination, slurred speech, and a shortened life-span were no longer unimaginable but expected. I believe that 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.”
Friedreich’s Ataxia is a debilitating life-shortening degenerative neuro-muscular disorder.  Symptoms can vary from loss of coordination in the arms and legs, fatigue, vision impairment, hearing loss and slurred speech, scoliosis, diabetes and serious heart conditions.  It is a genetic disorder and currently there are no treatments.  “My diagnosis is a lot to take in, but there is so much hope to be found right now for everyone affected by FA,” states Stephanie.  “There have been great leaps and bounds in the area of research proving that a cure is a very real possibility. Due to the advances in research, my own hope for a cure has pushed me into action.”
“While it has been anything but easy living with FA, I have learned to accept what I cannot change; I love my life and consider myself to be truly blessed. Everyone’s life goes in directions that seem unexpected and even unwanted at times, but we’re all in this life together. Everyone has a disability; some are just more obvious than others.”
Join Stephanie as she continues to raise funds and awareness for Friedreich’s Ataxia Research Alliance at the 7th Annual Stephanie’s Hope Holiday Boutique on November 13 at Rio Norte Junior High. “I want to make this year our best year yet,” states Stephanie.  “I want to raise awareness and show others that hope is not just a word; it’s a way of life!”
You can find out more about Stephanie’s Hope, Friedreich’s Ataxia, the annual holiday boutique and more by visiting www.stephanieshope.com.

SAVE THE DATE

‘Tis the Season to Shop with a Cause!
7th Annual Stephanie’s Hope Holiday Boutique

9 a.m. until 5 p.m. • November 10

Rio Norte Junior High • 28771 Rio Norte Drive in Santa Clarita

Twenty percent of each vendor’s total sales will be donated directly to the Friedreich’s Ataxia Research Alliance(FARA).  One hundred percent of the funds raised from the bake sale,?True reUSAble shopping bag sales and the raffle?will be donated directly to FARA.