Journey for a Cure
PALESTINE — Santa Barbara, Calif. residents Bill and Victoria Strong describe their 20-month-old daughter Gwendolyn Strong as an easy-going, happy little girl who likes to have fun and loves Sesame Street.
The Strongs will be in Palestine on Tuesday and Wednesday as part of their campaign to drive 5,000 miles with their daughter, who has Spinal Muscular Atrophy (SMA), a paralyzing and terminal disease, across the country in an RV armed with banners, corporate sponsors and a call to action to end SMA.
The “Sponsor-A-Mile to END SMA” drive (http://SponsorAMile.com), in which each mile driven is sponsored at $10 a mile, has a goal of raising $50,000. All proceeds will go to the Gwendolyn Strong Foundation (http://gwendolynstrongfoundation.org), which seeks to shed light on this deadly childhood disease and to fund SMA medical research that specialists and the National Institute for Health (NIH) believe is within five years of a cure.
This road campaign is no small feat for a couple traveling with a paralyzed SMA child who uses a breathing machine, a feeding tube, and who has to be suctioned every few minutes because she can’t cough or clear her own throat.
Why are they stopping in Palestine? Victoria’s grandparents, Harry and Madge Gillespie, were formerly longtime residents of Palestine, as were her great-grandparents, and great-great-grandparents.
Her grandfather Harry Gillespie is 104 years old and moved from Palestine to Mississippi in 1964.
“After our daughter was diagnosed we set a trip to see him but it was canceled due to her health,” Victoria Strong said via a phone interview while traveling in the RV on their way to New Mexico on Friday. “Gwendolyn can’t travel by plane so this was our last option. We got an ‘OK’ from her doctors. Gwendolyn is doing well and Harry is doing well, so now was the perfect time.”
Strong said her grandfather still associates his life a great deal to Palestine.
“He spent so much time in Palestine that it really is his home,” Strong said. “All of our ancestors are buried in Palestine. I’ve spent a lot of time there and I want to visit the cemetery and show my family the town because of our family roots.”
Gwendolyn was originally misdiagnosed with infant botulism at 9 weeks old.
“It was treatable and she seemed to improve for a short time,” Strong said. “A simple blood test would have let us know that she had SMA. It wasn’t until she was 6 months old that she was diagnosed.”
The Strongs had no family history of medical problems and the pregnancy was fine. Gwendolyn even passed all of her newborn tests.
Thousands of families a year are devastated by SMA. 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.
Getting the diagnosis of SMA was devastating.
“We were told to take her home and love her. There was no cure or treatment,” Strong said. “That’s why we are doing what we are doing.”
Thus far, Gwendolyn is beating the odds by surviving to the age of 20 months. The average age of death for infants with SMA is 8 months and almost all SMA Type 1 babies die by the age of 2.
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.
“SMA is basically Lou Gehrig’s disease for children,” Strong said. “They get weaker and weaker as their muscles degenerate. It impacts every muscle. She can’t walk, sit, stand, eat or breath without help. She requires medical care around the clock and is not left alone for even one minute because she chokes frequently on her own saliva.”
At home, the Strongs use the help of nurses at night to care for Gwendolyn for the suctioning and turning that is required.
During the 5,000 mile trip, the Strongs are taking turns sleeping.
“We didn’t want to bring nurses with us on the trip,” Strong said.
Despite her body’s limitations due to SMA, Gwendolyn is a normal 20-month-old who loves to play, sing, be read to and absolutely loves Sesame Street. She also goes to a special music class.
“She’s 20 months old now so we have to find creative ways to play. But she’s always stimulated and growing mentally,” Strong said.
Now moving into toddler territory, Strong said they have learned to communicate with Gwendolyn in many ways.
“She has ways of saying yes and no and we try to give her lots of options so she can participate,” Strong said.
Caring for the toddler at home includes giving her breathing treatments three to five times a day and feeding her through a feeding tube.
“Literally we have to save her life on a daily basis,” Strong said. “We nearly lost her so many times, especially in her first year. And we know so many families who have lost their children in under a year. It’s a constant reminder to cherish every moment that we have with her.”
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 medical community needs support to find the SMA cure. If medical researchers can find a way to keep the muscles working in SMA children, they will be given a chance at life in a fully functioning capacity.
“When we heard that it is estimated that in five years there could be a cure, it really woke us up out of our personal grief,” Strong said. “Five years is far too long for Gwen, but we can’t sit back and wallow in our own situation. With awareness and funding, we can help make it where other families don’t have to go through this.”
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.
“If you want to help, you can support our the ‘Sponsor-A-Mile to End SMA’ drive, sign the petition that will be used to lobby Congress, and read our blog, which chronicles the good and the bad of our daily life,” Strong said. “One in 35 people are carriers for the gene. Ask for prenatal tests if you are pregnant. It’s not this super rare disease, it’s as common as other diseases.”
The Strongs desire to help other parents who are dealing with similar circumstances, as they have been helped along the way as well.
“It’s such an unknown disease and it’s hard to know what questions to ask,” Strong 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.”
Changing Their Lives
How has Gwendolyn changed their lives?
“I always felt life is short and I never thought I would learn more from our child than anyone else,” Strong said. “I think she has taught me to take what life gives you.”
The Strongs’ journey began in Santa Barbara, Calif. on Father’s Day (June 21). They have driven through Nevada, Arizona and New Mexico with plans to arrive in Palestine Monday night or Tuesday. After leaving Palestine and visiting a family they met online who has a son with a form of SMA, the Strongs will head to Louisiana and then Mississippi to visit Strong’s grandfather before heading home.
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