Charming 20-month-old Gwendolyn Strong is being driven 5,000 miles from California to South Texas and other regions to help finance a cure for Spinal Muscular Atrophy.
SMA is a paralyzing and terminal illness. Gwendolyn’s parents, Bill and Victoria Strong from Santa Barbara, Calif., included South Texas in their long journey to help find a cure for this disease while visiting relatives across the nation.
Victoria Strong is the niece of Jon and Jeanine Gillespie, longtime residents of McAllen. They will be hosts to the Strong family at South Padre Island from July 10-12. Anyone interested in meeting them can reach Gillespie at his business phone, 956-664-4745, to contact the Strong family.
Little Gwendolyn already has earned national recognition, when she posed with her great-grandfather, 103-year-old Harry Gillespie, on his birthday in Vicksburg, Miss. The Associated Press photo helped raise funds for SMA research.
The Strong family has established the Gwendolyn Strong Foundation to raise awareness about SMA and finding a treatment and/or cure. Researchers estimate they are four to five years away from that goal.
“There is virtually nothing we can do to save Gwendolyn’s life,” her father said. “We don’t hold false hope that we can save her. But there’s no way we can sit back and just leave things as status quo.”
“I wish our daughter did not have SMA and that she would grow to live a full life,” said her mother. “I wish this for many reasons but watching Bill with her makes me long to see them together always.”
Gwendolyn is paralyzed and needs the help of machines to breathe, eat and even swallow. Her parents are working to raise awareness for SMA and help other parents who have the same diagnosis for their children.
Their foundation in no way supports Gwendolyn directly, but the large SMA community. More children die of SMA than any other genetic disease.
The modest contribution of $10 per mile, for as many miles a person wishes, has been suggested to raise $50,000 for the “Sponsor-a-Mile to END SMA” drive, no small accomplishment for a couple driving with a paralyzed child who uses a breathing machine, a feeding tube, and a suction cup to be used every few minutes because she can’t cough or clear her throat.