In October 1994, you were so kind to publish my letter to raise awareness of spinal muscular atrophy (SMA). My 1-year-old granddaughter, Audrey, had recently been diagnosed with the little-known disease. Today, I’m enclosing a letter that Audrey wrote about SMA. The response to her letter from friends and family brought to mind your genuine response to my letter of so many years ago.
Audrey’s school years have been amazing. She is near the top of her high school class, and her standardized test scores have prompted responses from colleges across the nation. Yet public awareness about her disease is still lacking. We thank you for your interest and help.
We welcome guest contributor Audrey Winkelsas, age 16, to help spread the word about SMA. Here are excerpts from her letter:
“More than 7 million Americans carry the gene that causes spinal muscular atrophy — a disease that sounds like a foreign language to most individuals. I received my first power wheelchair shortly after my second birthday and have faced many challenges. But I look at SMA as a blessing. If I didn’t have the disease, I might not be so dedicated to singing in the church choir and focused on school.
“Spinal muscular atrophy is the leading genetic killer of children under the age of 2. Over time victims become weaker; eventually, muscles that control actions as simple as swallowing become atrophied. Although most common in children, SMA may affect people of all ages. All are at risk.
“As of today, there is no treatment for SMA, but progress is being made. I dream of having to change my plans of becoming an SMA researcher because the cure has been found. One person can dream, but it takes many people working together to find a cure.
“If one person who previously knew nothing about SMA now cares, my work is done. To learn more about SMA, visit curesma.org or call Families of SMA at 800-886-1762.”