Since his great-granddaughter was 6 months old, 103-year-old Harry Gillespie has been preparing himself for news of her death. That’s when Gwendolyn Strong was diagnosed with spinal muscular atrophy, a genetic disease. Doctors told her parents she probably won’t live past age 2.
So the Vicksburg man was stunned to learn that his granddaughter, Victoria Strong, and her husband, Bill, are bringing 20-month-old Gwendolyn 5,000 miles from California to meet him. They planned to leave Santa Barbara on Sunday.
“I’ve been prepared for her to call me and say she had died,” said Gillespie. “It never occurred to me that she would come out to see me.”
Gillespie turns 104 on June 27. The Strongs hope to arrive in Vicksburg by the first week in July.
In SMA, a child’s body cannot make a protein needed for the nerves that control movement of arms and legs. Since the muscles cannot move, they waste away.
Gwendolyn appeared healthy at birth but was diagnosed at 6 months old.
“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.”
According to the SMA Foundation, the disease is caused by a missing or malfunctioning gene — and scientists have found a second gene that makes a much smaller amount of the protein in question. Researchers are looking for drugs or other therapies that could get the second gene to make more of the protein, called SMN, for “survival of motor neuron.”
The disease occurs in about 1 in 6,000 to 1 in 10,000 babies; about the same incidence as Duchenne muscular dystrophy or, in the Jewish population, Tay-Sachs disease, according to the foundation. It says more than 25,000 Americans are believed to suffer from the disease, which it describes as the leading genetic cause of death in infants and toddlers. The foundation also says that the research is likely to need $20 million to $30 million a year.
In addition to uniting the generations, the Strongs are raising money for research toward a cure and to support people affected by it. They created a foundation named after their daughter to raise the money.
“In just 10 days, we raised $20,000,” Strong said. “Our goal is $50,000; $10 for every one of the 5,000 miles we drive on this journey.” She said Gwendolyn is a bright, sociable tot. “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, Victoria quit her job as a middle school English and history teacher. Her husband began working from home as a certified public accountant.
“We make as many memories as we can,” Victoria Strong said.
Gillespie, a father of three, grandfather of eight and great-grandfather of 13, and his wife, Edna Earl Whitaker, are excited to meet Gwendolyn.
They used to be avid travelers, but health problems now prevent that pleasure.
“When you’re 104, you don’t trust your legs anymore,” Gillespie said.