BBQ Bash raises $18,500 for terminally ill child
At 19 months old, Baylor Scotting has a life expectancy of up to three or four years.
ROUND LAKE — A friendly competition between barbecuing enthusiasts at Round Lake Vineyards & Winery on May 22 has resulted in more than $18,500 raised for a Lake Wilson family whose 19-month-old son is terminally ill.
Baylor’s BBQ Bash brought together 20 grilling teams to prepare 240 pounds of pork loin provided by Jackson-based New Fashion Pork. The public voted on their favorites by filling up tip jars at each team’s site.
In addition, funds were raised through gate admissions, donations from corporate sponsors and purchases made during a large silent auction. All of the proceeds went to little Baylor Scotting and his parents, Tyler Scotting and Stormi Vanden Bosch.
Tyler works for Chad Kremer Construction, the contractor hired to complete several major building projects at the rural Round Lake winery during the last year.
“Chad Kremer came up to me in the winter and said he got his guys Green Mountain grills for Christmas and they wanted to have a cookout competition,” shared Scott Ellenbecker, who with his wife, Jenny, owns the vineyard and winery. Kremer wanted to turn the cookout into a fundraiser for Scotting and his family, and the participating teams ranged from backyard meat smokers to competitors.
“Baylor needs a lot of doctoring and I said, ‘Let’s make it a big party — as big as we can get,’” Ellenbecker shared.
Medical bills mounting
On Sept. 1, 2020 — 10 months after Baylor was born — he was diagnosed with Multiple Sulfatase Deficiency (MSD), a rare genetic condition that inhibits the body’s natural ability to dispose of cellular waste. The diagnosis is fatal, with a life expectancy of three to four years, shared Stormi following the check presentation last week at the winery.
“There’s no treatment,” she added.
There are currently 20 children living with MSD in the U.S., but it’s possible there could be as many as 1,000 children with the genetic disorder, said Baylor’s mom. The test to determine MSD costs $25,000 — a fee covered in Baylor’s case by the company that runs the genetic testing. In exchange, the company asked to use Baylor’s results in their study.
Baylor has 16 doctors across five hospital systems, along with 10 therapists, monitoring him. As a result, the family is on the road a lot between hospitals in Pipestone, Sioux Falls and the Twin Cities. Stormi became a stay-at-home mom to care for Baylor, so they lost their second income as a family.
“Because he was so sick when he was born, he doesn’t have insurance,” Stormi said. “This (money) will help a lot.”
There was no indication before his birth that little Baylor had health issues. He was born Oct. 31, 2019, via vacuum extraction at Pipestone Medical Center. A major hemorrhage upon his birth resulted in him being airlifted to Avera Hospital in Sioux Falls, South Dakota, and then ultimately on to Children’s Hospital in Minneapolis. Before he was two weeks old, he’d already had 43 blood transfusions, shared Stormi.
Baylor spent his first 43 days in the hospital before being allowed to go home with his family to Lake Wilson.
“We were given a 2% chance (that he’d survive) when he was born,” Stormi said. “We are happy for the chance to get to know him a little bit more and get to know his personality.”
Some of the related issues with MSD are that Baylor will eventually lose his hearing and his eyesight, and ultimately his body will stop functioning. Already, Stormi said they have noticed deterioration in his leg muscles, which means he won’t be able to crawl or walk.
Grateful for time, donations
Tyler and Stormi each donned shirts that said Grant Us Grace when they accepted the check from the fundraiser. The saying actually represents Minnesota siblings Grant and Grace, each of whom were diagnosed with MSD. The two are the first MSD patients in the U.S. to receive bone marrow transplants as a course of treatment.
“We’re hopeful that that can help us, but because of his bleeding, there’s a 25% chance of death,” Stormi said.
Speaking of odds, she said there’s a one in five million chance that both parents carry the recessive gene that can result in a child being born with MSD. While their family’s experience with the genetic disorder will end with Baylor, Stormi said a California family has received MSD diagnoses for three of their four children.
Tyler and Stormi have been able to connect with parents of other children living with MSD through Zoom — something that came about due to the COVID-19 pandemic.
“It’s brought us all together,” Stormi said. “In October, we’re going to Philadelphia to meet with doctors and do labs and meet other families.”
People can follow Baylor’s life on Facebook at the page "Baylor’s MSD battle." There, a link can also be found to a Go Fund Me page that raises money for the family.
“We’re so grateful,” Tyler said of the funds raised at the BBQ Bash and all of the donations that continue to come in.
“There’s no way I can ever say thank you so that you guys know,” added Stormi. “Everything’s about quality of life right now, and this (money) helps do that. We can make decisions about what our kids need and what makes them happy.”