Family on 5,000-mile journey to raise awareness of baby’s illness
SOUTH PADRE ISLAND - Strong is a fitting last name for 20-month-old Gwendolyn of Santa Barbara, Calif.
Little Gwendolyn, daughter of Bill and Victoria Strong, was diagnosed at 6 months of age with spinal muscular atrophy, a disease that doctors have estimated will claim her life by the time she turns 2.
But on July 11, at 21 months old, she will unite with many of her kin at an annual family reunion on South Padre Island as part of her mother and father's 5,000-mile drive across the country raising SMA awareness.
"... She's stable, so we got the doctor's permission to go," Victoria Strong, a former teacher and South Padre Island resident, said about her daughter. "My husband's sister loaned us an RV. It has a backup generator and enough power that it would power our daughter's (breathing) machine."
According to information from the National Institute for Neurological Disorders and Stroke, SMA occurs as neurons in the spinal cord die due to a missing gene that produces an essential protein.
In little Gwendolyn's case, the disease inhibits walking, sitting, standing, eating, breathing and swallowing, her parents said.
"But it doesn't impact her mind," her mother said. "She's so curious and has such a zest for life and a great sense of fun."
The family so far has raised $30,000 of their $50,000 goal since they started their drive on Father's Day.
"When ... you're told by a doctor that there's ... no treatment and no cure, that's just impossible as a father," Bill Strong, 32, said.
"While there's nothing we can do to save our daughter, we can help future generations from going through the same thing we are," he said.
The drive is sponsored by the Sponsor-A-Mile to END SMA program, which will donate $10 per mile toward the Gwendolyn Strong Foundation, a non-profit organization started by the Strongs to help fund SMA research.
The Strongs have already visited Las Vegas, Nev.; Sedona, Ariz.; Santa Fe, N.M.; and Palestine, Texas. They plan to go to Vicksburg, Miss., and New Orleans, La., in their decal-clad RV
The family also blogs about their experience with the disease on www.GwendolynStrong.com
"My aunt and uncle ... and all of my cousins have seen photos, read our blog and talk on the phone but they have never actually met Gwendolyn," Victoria Strong said about the family's upcoming South Padre Island trip.
"If we're going to make this wish come true, we're going to have to do it now," she said. "We're enormously passionate about raising awareness about SMA."
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