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Local Family Stays Strong in Their Hope For a Cure
Gwendolyn Strong has the spirit of any Santa Barbara 10-month-old. She loves holding balloons, taking baths and the wind at the beach.
“Her new favorite is peek-a-boo,” says her mom, Victoria. “She loves to be kind of scared. She thinks it’s so funny.”
But Gwendolyn is also different. She has a degenerative motor neuron disease called Spinal Muscular Atrophy, which keeps her brain from producing the amount of protein needed to sustain vital muscles in her body.
SMA is the leading genetic killer of children younger than age 2, and it’s virtually undetectable in newborns. Only when the growing body begins requiring more protein do problems arise, leading to difficulty in breathing, eating and movement.
“When we first found out, we were shocked. We were devastated,” Victoria said of the April diagnosis. “The doctor just told us to go home and love our baby. That was all we could do.”
At this point, the heartsick parents were not aware of the SMA Treatment Acceleration Act for which many SMA families were lobbying to get into Congress.
If approved, the landmark legislation would provide researchers with the funds to undoubtedly find a cure for what the National Institutes of Health has selected as the disease closest to treatment of more than 600 neurological disorders.
Unaware of the political movement and still grieving, the Strongs began researching the disease and were led to one of the top SMA research facilities at Stanford University.
“We talked to about five different people around the country, and they all said the same thing,” said Gwendolyn’s dad, Bill. “We needed to get her breathing assistance, and we needed to get her a surgery so she could eat. If we didn’t, her time would be less.”
Two weeks after the diagnosis, Gwendolyn was admitted to the Lucille Packard Children’s Hospital at Stanford for the necessary surgery to help her eat through a tube.
The Strongs spent three weeks at LPCH learning how to improve their daughter’s length and quality of life — helping her eat, breath and cough all with machines. They returned home to Santa Barbara in an ambulance because Gwendolyn was so fragile from the surgery.
As the Strongs adjusted to their new daily routine, they began to learn more about the SMA community. Bill started a blog to keep their community updated and found comfort in international support groups such as Fight SMA, soon discovering there was hope of a cure in only a few years.
After seeing a video of Sen. John Kerry sign on to co-sponsor the SMATAA at the annual FSMA yearly conference in June, Bill says the couple realized “there was something we could do instead of just sitting here and waiting.”
They organized a letter-writing campaign among their friends and family to get people to write their representatives in support of the bill; but they soon realized people needed a simpler task.
When friends recommended that the Strongs start a petition, Bill says they thought, “It has to have been done. It’s such a close-knit community.” But a Google search returned no such results.
“We just threw one together, did a little research on what company to use to host it and sent it to our contacts,” Victoria says. “We set our initial goal at 1,000 signatures, and we reached it in four days.”
Empowered, Bill and Victoria raised their goal to 10,000 signatures and began to explore new ways of reaching people. They got immediate support from established organizations such as FSMA and Families of SMA, which presented the petition in Washington, D.C., when it reached 2,000 signatures.
Martha Slay, the president of FSMA, told Victoria that it immediately opened doors that hadn’t been there before. “They said (the petition) couldn’t have come at a better time because they are trying to get this bill on the floor by September,” Victoria said.
FSMA representative Caroline Gibson said the petition has been a phenomenal asset and that the SMA community is feeling optimistic about the future of the bill.
“We’ve been taking the data to the health aides in Washington and sharing it with them,” Gibson said. “We now have Rep. Tim Murphy from Pennsylvania, and we are touching base today with health aides from Pennsylvania and Georgia.”
The viral response and the positive effect on their spirits has been remarkable. “Lois Capps has already signed on,” Bill said. Victoria added, “And so has Obama. And you know he’s busy.”
The Strongs are working with national organizations to provide demographic data about the signatures to inform representatives of how many of their constituents are supportive of the legislation.
“We are literally leaving no stone unturned,” Bill said. Using online social networks such as You Tube, Facebook and blogging, Bill has utilized his technology background to drum up support.
“The interesting thing about Victoria and I is we are just two people in a room with a sick baby,” Bill said. “It’s amazing how this has gained momentum.”
The couple have upped their signature goal to 50,000, after surpassing their old goal on July 31.
To sign the petition, click here.
Noozhawk intern Mollie Helmuth can be reached at firstname.lastname@example.org.
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