Race against time: Grandfather, ill great-grandchild set for first meeting

Harry Gillespie and his great-granddaughter are in a race against time.
 
Gillespie is 103 and Gwendolyn Strong, 20 months, is battling spinal muscular atrophy, a neurological disease that inhibits muscle use. Gwendolyn’s not expected to live past 2, and Gillespie’s looking toward his 104th birthday, a week from today.
 
So, when Gwendolyn’s mother, Victoria Strong, called Gillespie and told him the family would travel from Santa Barbara, Calif., to Vicksburg for a visit, he was “absolutely stunned.”
 
“I’ve been prepared for her to call me and say she (Gwendolyn) had died,” said Gillespie, who is Strong’s grandfather. “It never occurred to me that she would come out to see me.”
 
Gwendolyn, called “Baby Kitten” by Gillespie, was diagnosed with SMA at age 6 months. She will never be able to crawl, move her head or neck, or walk.
 
“We were shocked and devastated,” said her mother. “We know research is not going to save Gwendolyn. But, with research, they will develop a cure in five years.”
 
The Strongs will leave Sunday, headed to Vicksburg in an RV, and hope to make it here by the first week of July.
 
The trip’s purpose is twofold — to introduce Gillespie to the great-grandchild he’s never met and to raise money for the Gwendolyn Strong Foundation through Sponsor-A-Mile.
 
“In just 10 days, we raised $20,000,” said Strong. “Our goal is $50,000 — $10 for every one of the 5,000 miles we drive on this journey.”
 
The Vicksburg Rotary Club has pitched in, Gillespie said, with members sending letters urging Congress to support SMA causes. At 103, he is the oldest member of the local club.
 
And, Ameristar Casino will donate $1,000 to the foundation and provide RV accommodations and meals for the family during their visit.
 
“We feel we have a corporate obligation to give back to the community,” said Bess Averett with Ameristar public relations.
 
Sometimes called the Lou Gehrig’s disease of infants, a child born with SMA appears healthy at birth, says Strong. About one in 6,000 babies are affected, and one in about 40 people carry the gene.
 
“People are unknowing carriers of SMA,” Strong said. “Both parents have to carry it in order for a child to get it.”
 
Nonetheless, Gwendolyn is a bright, sociable tot, her mother says. “She’s a happy baby and easygoing. She loves going to the zoo. She loves for us to read her books. We try to focus on what makes her happy.”
 
When Gwendolyn was diagnosed with SMA, Victoria quit her job as a middle school English and history teacher. Her husband, Bill, began working from home as a certified public accountant.
 
“We make as many memories as we can,” Victoria Strong said.
 
The National Institutes of Health is closer to finding treatment for SMA than for some 600 other neurological disorders, she says. “That snapped us out of our grief for Gwendolyn. We started an online petition to get NIH to support funding for research.”
 
So far, about 65,000 people, including Rotarians and more than 500 Mississippians, have placed their signatures at PetitionToCureSMA.com.
 
All funds raised go to the Gwendolyn Strong Foundation.
 
“We’d rather sacrifice a few things and see that the disease is cured,” said Victoria Strong.
 
As a father of three, a grandfather of eight and great-grandfather of 13, Gillespie and his wife, Edna Earl Whitaker, are excited to meet Gwendolyn. In the past, they were avid travelers but health problems have prevented that in recent years.
 
“When you’re 104, you don’t trust your legs anymore,” Gillespie said.

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