Family visits Palestine roots during tour

Cheril Vernon

Jul. 1, 2009 (McClatchy-Tribune Regional News delivered by Newstex) -- PALESTINE -- Stopping at the Texas State Railroad Palestine Depot, Bill and Victoria Strong of Santa Barbara, Calif. spoke out about Spinal Muscular Atrophy (SMA) awareness and their love for their 20-month-old daughter Gwendolyn, who suffers from the paralyzing and fatal disease, during a media event Tuesday morning featuring area radio, newspaper and TV stations.

The Strongs stopped in Palestine as part of their campaign to drive 5,000 miles with their daughter across the country in an RV armed with banners, corporate sponsors and a call to action to end SMA -- the No. 1 genetic killer of children.

Palestine holds a special place in the hearts of the Strongs. Victoria Strong's grandparents Harry and Madge Gillespie, were formerly longtime residents of Palestine, as were her great-grandparents, and great-great-grandparents.

Her 104-year-old grandfather Harry Gillespie moved from Palestine to Vicksburg, Miss. in 1964. Gillespie will meet his great-granddaughter for the first time today when the RV rolls in to Mississippi.

"I can't wait to see him and introduce him to Gwendolyn," Victoria Strong said. "Given our passion for awareness, when we decided to take this trip we couldn't not take the opportunity to reach more people. It would have been a lost opportunity."

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.

"Our goal is to raise $50,000 and we've already raised $30,000 and we are not even at our halfway mark," Victoria Strong said.

While in Palestine, the Strongs toured the area where her grandparents used to live and visited Palestine landmarks.

Amazingly, Gillespie still lives at home in Vicksburg, giving up driving at age 100, but still attending the weekly Rotary Club meetings. He is a former member of the Palestine Rotary Club and is one of the oldest living Rotary International members.

If you heard Gillespie talk, his granddaughter said, you would know a few things real fast: "He's from Texas and Palestine and everybody knows it."

During Tuesday's media event, the Strongs thanked East Texans for their hospitality and support for their cause.

"East Texas is full of such wonderful people and we just appreciate everyone for being here," Victoria Strong said.

Holding tight to her Big Bird stuffed animal in her stroller, Gwendolyn was the center of attention at the Texas State Railroad, receiving a bag full of gifts from the gift shop including a train whistle and her very own copy of "The Little Engine That Could™" book.

Before they left, Gwendolyn's parents took her out of her stroller so she could see The Little Engine That Could™ parked outside on the train tracks while she listened to the train whistles blown especially for her.

"She inspires us every day," Victoria Strong said. "She just has an enormous zest for life. She loves to play as all children like to do."

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. 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.

"We were told there was nothing to do. I would swim to China if that would do it," Bill Strong said. "This is why we are doing this instead of wallowing in our grief."

With enough awareness and funding for research, SMA could be curable in five years, the Strongs said, noting that one in 35 people are carriers for the gene that causes SMA.

Newly elected mayor Bob Herrington was part of the small crowd that gathered at the Texas State Railroad Tuesday to meet the Strongs.

Touched by their passion, Herrington told the couple "you have a good last name -- it embodies your character."

For TSRR marketing director Lori Pennington, hosting the media event for the Strongs was an honor.

"We are glad to have this amazing family come here and give us the opportunity to meet them," Pennington said. "We are very happy to meet them and support them in anyway we can."

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, the Strongs have blogged about their journey on http://GwendolynStrong.com

-- -- -- --

Visit the Herald-Press Photo Gallery at www.palestineherald.com for more photos from the TSRR event.

Newstex ID: KRTB-0337-36164889