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Gwendolyn, Victoria and Bill Strong have been on a journey to raise awareness of spinal muscular atrophy.
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Journey of love stops in SPI

This family's 5,000-mile trip could save other children

Being told your infant child has a terminal illness is the most devastating diagnosis a parent can get.

Finding out that illness is the number one killer of children under 2 years of age and then discovering there is no treatment, cure or even much research was unacceptable for one family.

Gwendolyn Strong was born seemingly normal and healthy, but she was only a few months old when her parents knew something was wrong. She seemed to have problems with her muscles and motor control.

When she was 6 months old, Gwendolyn was diagnosed with spinal muscular atrophy or SMA, an often fatal genetic disease that causes degeneration of motor neurons and leads to muscle atrophy.

SMA is caused by a gene mutation that can be detected with a simple test.

“Both me and my wife carry the gene,” Bill Strong said. “In fact, one in 30 people carry the gene and don’t know it. Right now I’m in an RV park with about 3,000 people. That means there could be 100 people here alone who have the gene.”

And yet surprisingly little is known about this disease. Bill and Victoria Strong, Gwendolyn’s parents, are determined to see that change.

Victoria Strong is very close to her elderly grandfather who lives in Mississippi. She always wanted her daughter to meet her great grandfather, but Gwendolyn’s diagnosis made travel almost impossible. The Strongs live in California and Gwendolyn requires a multitude of life critical machines just for normal functions like breathing and eating.

That’s when the couple came up with a way to get their daughter to Mississippi as well as raise funds and awareness for SMA. They purchased an RV and started publicizing their 5,000 mile trip that included a stop on South Padre Island for a family reunion.

They hoped people would donate by sponsoring each mile of their journey. They asked only $10 per mile, with a goal of raising $50,000, all of which would go to SMA research. They also hoped the media coverage would educate the public about their daughter’s illness and the need for research.

Bill Strong said that experts like James Watkins estimate SMA could be eradicated with the proper resources. Strong said research into SMA could help eliminate other diseases like parkinsons, alzheimers and Lou Gherrig’s disease.

“They don’t need billions to end this disease,” Strong said.

On Father’s Day, June 21, the Strong family set out from Santa Barbara, Calif. to Mississippi, making stops along the way to speak to the media. On July 2, 21-month-old Gwendolyn met her 104 year-old great grandfather Harry Gillespie. After an inspiring visit, it was time to start the journey home.

This weekend they are on South Padre Island with family members as part of the journey that so far has also brought them more than half way to their goal, having raised about $35,000.

Victoria Strong’s aunt and uncle live in McAllen and each year they hold a family gathering on SPI. This year Bill and Victoria were determined to attend and allow Gwendolyn to meet the family she was separated from due to her illness.

“All of these people have never met Gwen,” Bill Strong said. “But they have been super supportive whether we were in Las Vegas to Mississippi to here in Texas. It was amazing and something we’ll never forget as a family. To take this trip and not turn it into an awareness campaign would have been a loss.”

In a few days the Strongs will once again hit the road, hoping to be back in Santa Barbara by July 17. Although the journey has been challenging, the Strongs say it was worth it.

“We’ve definitely made a difference and we’ve been touched by all the random acts of kindness from the mayor of Palestine, Texas who made us honorary citizens to the newspaper that gave us four front page covers,” said Bill Strong. “We’ve definitely been touched by all the goodness.”

To read about Gwendolyn Strong’s daily adventures on her 5,000 mile journey, visit her blog at gwendolynstrong.com. To donate to further SMA research and sponsor the Strong’s trip, visit www.gwendolynstrongfoundation.org.


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Just a quick clarification, they didn't purchase a RV, they borrowed a RV from family members. I'm just someone who has been following their blog for about a year now, and didn't want anyone to get the wrong impression.

Kim N. - Jul 16, 2009 09:38:22 AM Remove Comment
 

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