Bill and Victoria Strong’s daughter has Spinal Muscular Atrophy, or SMA. They describe their 20-month-old daughter Gwendolyn as an easy-going, happy little girl who likes to have fun and loves Sesame Street.
Gwendolyn can’t travel by plane, so her great-grandfather in Mississippi can only see her if the Strongs drive from their home in Santa Barbara, California.
They are stopping along the way, working to put an end to a paralyzing and terminal disease.
Twenty month old Gwendolyn was originally misdiagnosed when she was nine weeks old.
“Infant botulism was the misdiagnosis. She was smiling that morning we took her to the doctor and she could no longer smile. By that night, she was completely paralyzed,” said Victoria Strong, adding that her daughter was a seemingly normal, healthy child before that day.
Thousands of families a year are devastated by SMA. Victoria explained, “SMA is a degenerative, terminal disease it’s in fact often termed the Lou Gehrig’s disease of infants. The life expectancy is two years. Most children don’t make it to that.”
The Strongs had no family history of medical problems and the pregnancy was fine. Gwendolyn even passed all of her newborn tests. The disease is caused by an abnormal or missing gene known as the survival motor neuron gene (SMN1) that is responsible for the production of a protein essential to motor neurons.
As a result, although born seemingly healthy, as SMA infants grow, their muscles degenerate causing paralysis and ultimately death. SMA impacts the ability to walk, sit, eat, breathe and even swallow, but the mind remains unaffected and children with SMA are exceptionally bright. SMA parents are tortured by watching their young children degenerate before their eyes.
If you previously had not heard of SMA, you are not alone — the Strongs hadn’t either. More children die of SMA than any other genetic disease and one out of every 35 people are genetic carriers, yet awareness of this disease is shockingly limited.
“The first question we get is why haven’t I ever heard of this? That’s exactly what propels Victoria and I to continue doing what we’re doing because very few people whose children are diagnosed have ever heard of it,” said Bill Strong.
The Strongs care for their daughter around the clock, while simultaneously devoting themselves to SMA awareness and medical research for all families affected by the disease. They are fully aware that the results of their efforts will more than likely not be in time to help their own daughter.
Even though their efforts won’t save their daughter, the Strongs are fighting the disease, raising awareness to help other parents.
When asked why they do it, Bill said, “having people understand what SMA is and how close it is to a treatment so that when their child shows symptoms at an early age, they’ll be able to understand that they do have tests, simple tests to diagnose.”
Victoria added, “we’ll be able to know that we did everything in Gwendolyn’s honor.”
In their quest for an end to SMA, the Strongs have established the Gwendolyn Strong Foundation http://gwendolynstrongfoundation.org with the sole mission to fund medical research for a cure for SMA.
The foundation also aims to create SMA awareness and to support families impacted by SMA and other life-altering diseases. The Gwendolyn Strong Foundation in no way supports Gwendolyn directly, but rather the larger SMA community.
The good news is there is hope. Leading SMA researchers, including Nobel laureate James Watson, and the NIH agree that a cure is very close — within five years, with the proper funding. According to the NIH, Spinal Muscular Atrophy was chosen as a disease of priority because of the severity of the disease, its relatively high incidence, and the fact that the gene has been identified and the gene product is known, resulting in leads on possible treatments. There is a gap in funding to advance research on SMA, but if progress can be made, it would have implications for other diseases.
The Strongs also have created a grassroots campaign with an online petition http://PetitionToCureSMA.com to support bipartisan legislation, The SMA Treatment Acceleration Act of 2009 (H.R. 2149 and S.. 1158) currently in both the House of Representatives and the Senate. To date the petition has garnered over 64,000 signatures.
Since Gwendolyn’s diagnosis, these inspirational parents have blogged about their journey on http://GwendolynStrong.com , which has a legion of daily followers, most of whom are not personally known to the Strong family.
“It’s such an unknown disease and it’s hard to know what questions to ask,” Victoria said. “My husband and I felt so lost and alone in the beginning and we have a desire to give back, especially to those who have a child who is newly diagnosed.”
If you want to help “Sponsor- A Mile” directly, log on to, http://SponsorAMile.com . They Strongs hope to raise 50 thousand dollars to support a cure for SMA. So far, they have 30 thousand and they aren’t half way through their journey.