Bill and Victoria Strong may not find the cure for spinal muscular atrophy at the end of their 5,000-mile road trip that begins on Sunday, but the Santa Barbara couple hope the month-long RV trek will raise $50,000 toward research into the disease, which afflicts roughly 1 in 6,000 babies, including their daughter, Gwendolyn.
The trio will see new places along the way, take part in a family reunion and make a stop in Vicksburg, Miss., so 20-month-old Gwendolyn can meet her 104-year-old great-grandfather, Harry Gillespie, who calls the littte girl — his 13th great-grandchild — “baby kitten.”
By the time they return to California on July 18, the Strongs, both 32, hope many more people will know about and want to get involved with helping families facing a life where a young death is a certainty.
According to the nonprofit group Families of Spinal Muscular Atrophy, a missing or mutated gene robs motor neurons of their ability to send out nerve fibers to muscles. As a result, nerve cells can atrophy, shrink and die, causing muscle weakness. This in turn affects the voluntary muscles used for crawling, walking, head and neck control and swallowing.
Some studies suggest 1 in 35 people are SMA carriers.
Mr. and Mrs. Strong both are. As are some of the people you probably see at the neighborhood coffee shop, said Mr. Strong. Or the neighborhood bar, added Mrs. Strong.
Their point being SMA is not as rare as people think.
The Strongs’ fundraising trip has been about a year in the making and they are seeking donations through their Sponsor-A-Mile To End SMA campaign. All of the proceeds will go to the Gwendolyn Strong Foundation to benefit SMA research.
“We’re halfway to our goal, and we haven’t even left yet,” a thankful Mrs. Strong said Friday during an interview at the couple’s home.
Mr. Strong will be behind the wheel of the 38-foot motor home; his wife is in charge of child care.
The diesel-pusher, which belongs to Mr. Strong’s sister, Kristen Carter, of Simi Valley, will provide all the comforts of home and plenty of room and power for the equipment that Gwendolyn, who has already outlived most of her peers, needs.
“She’s on seven life-critical machines almost every minute of every day,” said Mr. Strong.
To ensure that they don’t get stuck in the middle of nowhere should one of the machines fail, LifeCare Solutions of Ventura has provided an entire second set just for the trip.
“We couldn’t have done this without them,” said Mr. Strong. “The risks now are minimal.”
That they are raising money on their own is nothing new for SMA families, said Mrs. Strong. Despite doctors across the nation saying adequate funding could bring treatment within five years, Mrs. Strong said, “The adequate funding has not happened.”
“The parents have to be their own advocates,” she added. “Literally it’s been the parents raising money through garage sales and lemonade stands.”
She and her husband are raising money one mile at a time. They’re asking people to pledge $10 per mile for the trip, which will take them to, among other places, Las Vegas — to see great friends — Sedona, Ariz. — someplace they always wanted to visit — South Padre Island, Texas — annual family reunion, which they missed last year because of Gwendolyn’s condition — and Palestine, Texas — great-grandfather Harry’s birthplace and the final resting place of Mrs. Strong’s mother, Susan DeBard Withey.
“Our goal is to blog every single day of the trip,” said Mrs. Strong. The idea being, Where in the world is Gwendolyn?
The blog and information on making donations is at www.gwendolynstrong.com.
The trip will end in Simi Valley in about a month, where they will turn the RV back over to Mrs. Carter.
They know the effort won’t do anything for Gwendolyn: The average life-span for an SMA baby is two years.
But Mr. and Mrs. Strong say the trip is a dream come true in that generations of the family will come together, if only for a day or two.
“I can’t imagine what it’s going to be like with her not being here,” said Mr. Strong.