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Victor Maccharoli- Bill and Victoria Strong and their daughter Gwendolyn, 20 months, will be taking a cross-country trip to visit Gwendolyn's great grandfather and raise awareness of Spinal Muscular Atrophy.

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Couple finds strength in fighting for a cure

By ERIC LINDBERG — June 19, 2009

When Bill and Victoria Strong’s daughter was born after a problem-free pregnancy 20 months ago, they had little idea that their lives would be thrown into a whirlwind of emergency rooms, doctor visits and constant medical care.

The Santa Barbara couple had no reason to think anything would go wrong. Gwendolyn Strong lived up to her surname, a healthy 6 pounds, 9 ounces, and showed no signs of trouble in her early infancy.

But at nine weeks, her health suddenly spiraled downward. After a lengthy stay in the hospital and a misdiagnosis, doctors eventually told the Strongs that their daughter had a terminal illness — spinal muscular atrophy, or SMA.

“We were obviously devastated and in shock, but one of the things that kind of snapped us out of our grief was learning that scientists and researchers signed a written statement that, if given adequate resources and funding, this disease could be cured in five years,” Victoria said.

In short order, they became veritable experts on the disease and learned how to ensure their daughter would be as comfortable and happy as possible.

They also launched a continuously growing effort to educate the public about the effects of the degenerative disease, which remains relatively unknown to the general populace despite being the No. 1 killer of infants and toddlers.

Their organization, the Gwendolyn Strong Foundation, seeks to raise funds for SMA research and spread awareness. This Sunday, the family will set off on a 5,000-mile trek across the country in a recreational vehicle, the only way for Gwendolyn to travel safely with her medical equipment in a germ-free environment.

The trip was largely organized as a way to visit Victoria’s 103-year-old grandfather — who has never met his great-granddaughter in person and will turn 104 this month — but also to continue their awareness campaign.

“We can’t just sit here and wait for our daughter to die,” Victoria said. “We have to do something to help speed up the process of finding a cure.”

Caused by an abnormal or missing gene needed for the production of a protein critical to creating motor neurons, SMA causes muscle degeneration as infants grow, resulting in paralysis and eventually death. An estimated 1 in 35 adults are carriers of the recessive gene that causes the disease.

Gwendolyn, although relatively healthy and stable at the moment, is nearing the two-year life expectancy for infants with SMA, a fact that the Strongs have accepted, however painful.

“While we don’t hold false hope that anything we are doing will save Gwendolyn, I can’t imagine just doing nothing,” Bill said, adding later, “I wouldn’t be able to live with myself if, after Gwendolyn is gone, I didn’t do everything I could to help find a cure.”

They hope to raise $50,000 during the month-long trip through a $10-a-mile sponsorship program at sponsoramile.com. All proceeds will benefit the foundation, which is in the process of seeking nonprofit status.

Along the route, which will take the family through Nevada, Arizona, New Mexico, Texas and Louisiana en route to Vicksburg, Miss., the Strongs will pass out flyers about SMA and their RV will be plastered with stickers promoting the cause.

“We realized it would be a missed opportunity not to try to continue campaigning to raise awareness of this disease,” Victoria said.

The couple has already elicited 221 supporters to join the sponsorship program, surpassing the halfway mark by raising $26,845.

But that number is far short of how many people have been impacted by their story. Their blog at www.gwendolynstrong.com, which started on the date of Gwendolyn’s birth and has grown to nearly 400 individual posts about their daily experiences, gets roughly 750 unique hits each day.

Another 64,000 people have signed on to the Strongs’ online petition, at petitiontocuresma.com, to encourage bipartisan legislation in support of SMA research.

While legislation during the prior session of Congress did not pass by the time they adjourned, Bill said it had strong support with 20 percent of the House of Representatives and Senate signing on.

They are hopeful that the SMA Treatment Acceleration Act of 2009, currently working its way through the congressional process, will be approved.

“That would be a huge step in the right direction,” Bill said. “The biggest thing that it’s going to do is provide more organization around what research has been done at various institutions around the world.”

Caught up in the tumultuous nature of parenting a child with SMA while fighting to raise awareness about the disease, the Strongs acknowledged their world has been turned upside down. Victoria can’t even remember life before Gwendolyn.

Due to their daughter’s need for continuous attention, Victoria no longer works and Bill works from home.

“Someone needs to be with her at all times, because she could choke at any second,” Victoria said. “So I am literally next to her, or someone is next to her, at all times. Our life — I can’t even remember what it was like before.”

Still, they strive to give their daughter all the experiences of a normal childhood, at least to the extent that SMA allows them. It could be something as simple as taking Gwendolyn on a playdate, dressing her up as a princess, picking out her first pair of shoes or taking a walk to the park.

“She’s a really happy, happy baby,” Victoria said. “That helps, because seeing her smile and seeing her have so much pleasure in things helps push us to do more.”

“She has a zest for life,” Bill added. “She loves to laugh. She loves Sesame Street.”

With only a few days left until the Strongs set off across the country, the couple said they are looking forward to introducing Gwendolyn to her great-grandfather.

Each time Victoria spoke with her grandfather on the phone before the trip was envisioned, they would tell each other they hoped to see each other soon.

“But we both definitely thought it may not happen,” she said. “He’s telling anybody that will listen that Gwendolyn is on her way.”

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Thanks for publishing such a great article on such an important issue and such an amazing SB family!

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