19 Mar Tour Players Rally around Young Valencia Boy
By Bob Buttitta
Teri Fox has two choices, raise the $3.5 million for the gene therapy treatment her 13-year-old son Sebastian needs to save his life or watch her son die.
Sebastian suffers from Batten Disease CLN8, a genetic disease that causes seizures, blindness, cognitive and physical impairment and is ultimately fatal at a young age, usually before 20.
The good news is that geneticists have agreed to take on Sebastian for a gene therapy protocol that will save his life, but it has to happen within the next 12-15 months and the cost of $3.5 million is not covered by insurance.
Fortunately for Sebastian and his family, they have longtime PGA TOUR player Jason Gore and his wife Megan in their corner.
Gore’s 12-year-old son has been friends with Sebastian for years, having played tee ball together when they were five and having attended the same school in Valencia. After hearing about the severity of Sebastian’s situation, the Gores sprung into action, trying to raise the money needed to cover Sebastian’s treatment. Wednesday’s Pro-Am for the 2017 Genesis Open served as the kickoff for a fundraising campaign they are calling #HealingHugs.
“We’ve seen his decline over the years but didn’t realize the direness of Sebastian’s situation until his family announced in January that he had been diagnosed with Batten CLN8,” Gore said. “When we were told that he was eligible for a gene therapy treatment that would save his life, but that would cost his family $3.5 million and that the fundraising and the treatment would have to be done within a year, we knew we had to help in any way we could.
“As friends of his family and as parents we could see ourselves in their shoes. Sebastian is the kindest most amazing boy.”
While Jason is playing in the Web.com event in Bogota this weekend, Megan, Sebastian and his family were out in full force at Riviera on Wednesday, where Megan and Sebastian made the rounds to let players know what was happening and hopefully have them get on board to help raise awareness for the campaign.
Papers about Sebastian’s story were put in players’ lockers at the beginning of the week with Hershey hugs. So they knew about the story before meeting Sebastian.
“The guys have been so great,” Megan Gore said. “It’s Valentine’s week and (the tour) just happens to be here (at Riviera). We’ve been really lucky. It’s been such an overwhelming response. This campaign needs to fly. We can’t wait for it to happen organically.”
As they made their way around the course, Megan Gore held Sebastian’s hand to help him guide him (he’s color blind and only sees shapes and sizes of objects).
Gore is extremely popular with his fellow Tour competitors, so it was no surprise that Sebastian got quite a reception from players he met. Ben Crane posted a picture of the two of them together on Twitter and Sebastian gave him two hugs. Bryson DeChambeau gave him a signed hat and Kyle Reifers told the young boy how much he loved his energy.
Sebastian’s parents started the Sebastian Velona Foundation and the information for how to donate can be found at CureBattenCLN8.org. Donations are tax deductible via the Sebastian Velona Foundation as a project of The Giving Back Fund, which is a 501(c)(3) charity.
“It’s nice to have help from complete strangers,” Teri Fox said. “We’re trying to raise money not just to save his life but the lives of others with CLN8.”
While he’s well aware of how generous players on the PGA TOUR are, even Gore admitted he’s been overwhelmed by the response of players to their outreach for help.
“Everyone who meets Sebastian is immediately drawn to help him,” Gore said. “This is the beginning of something that is hopefully a successful campaign to save Sebastian’s life. It’s the snowball that gets the avalanche started.
“The PGA TOUR’s charitable motto is `Together, Anything’s Possible’ and that’s exactly how we feel about sharing Sebastian’s story and saving his life.”
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