20 Mar Top Pro Golfers Embrace 13 Year Old Boy in Race to Cure Rare Disease

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PACIFIC PALISADES, Calif. — Sebastian Velona didn’t just meet dozens of the world’s best professional golfers at Riviera Country Club this past week. He hugged them. All of ’em. The 13-year-old hugged Jordan Spieth. He hugged Bubba Watson. He hugged Dustin Johnson, right before Johnson went on to win the Genesis Open and become the No. 1-ranked player in the world.

One by one, Sebastian would meet each player, hold his cane under his arm and immediately embrace the player. Not a hi-nice-to-meet-you kind of hug, either. A tight squeeze, the kind that can crack a back.

He calls them healing hugs. And they work; many of the players Sebastian hugged wound up enjoying a successful week at the tournament.

He was a typical, rambunctious little boy. At age 5, he played T-ball for the Angels. He was the best player on his soccer team. During the summer months, he’d take golf lessons near his home at TPC Valencia. Just a little boy doing all the things little boys like to do.

The seizures, which started when he was 4, were the first sign something was wrong. The doctors diagnosed him with epilepsy, but that wasn’t it. He started losing his vision. Then his cognitive abilities and motor skills.

Through DNA analysis, it was discovered that Sebastian has a rare neurological disease called Batten CLN8. The impact is similar to that of ALS.

Sebastian is already almost completely blind. Within the next year, he’ll be confined to a wheelchair.

He isn’t expected to live past 20.

Not unless his family can raise enough money for a developmental gene therapy procedure that could cure him of the disease. The family just found out about it last month from a UCLA neurologist. It’s a procedure involving a 15-minute epidural that, in time, might allow Sebastian to walk without his cane and possibly regain his eyesight. He could become that rambunctious little boy again. Total cost of the treatment: $3.5 million.

“This is my son,” said Teri Fox, Sebastian’s mother. “They have it. I’m not going to watch him deteriorate and die.”

Enter golf. Enter the PGA Tour. Enter the Gore family.

Jason Gore has been a professional golfer for the past 20 years. He has seen the highs of the game — such as leading the 2005 U.S. Open and later that year winning his only PGA Tour title — and plenty of lows. This year, he’s in “purgatory” with only conditional status on the highest level.

Jason and his wife, Megan, first met Sebastian when he played T-ball and soccer with their son, Jaxon. When they heard about the recent developments toward curing his disease, they knew they had to help.

While Jason competed in the Web.com Tour’s Panama Claro Championship last week, Megan made the hourlong drive to Riviera with Sebastian and his family. They placed his photo in every player’s locker, along with a bag of Hershey’s Hugs candies and a note that read: “These hugs are from Sebastian. Now help him get the message out to find his cure.”

They all came for the hugs — those healing hugs. They took pictures with Sebastian, holding a sign with a link to his website, and posted them to Twitter and Instagram. They did exactly what the note asked, helping get the message out to find his cure.

“We felt like we were in their way,” Teri said. “But I could not believe the welcoming. Whether they donate or not, just the exposure and that they cared so much was amazing. They said, ‘We want to help.’ … They’re teary-eyed.”

It’s tough to calculate just how much the exposure has helped from a tangible monetary perspective, but it’s been invaluable in spreading that message and pushing toward the final goal.

“There is a cure for this,” Jason Gore explained. “There is a light at the end of this tunnel. Other diseases, we’re still searching for answers. There’s an answer for this; we actually can help. That’s why it’s so vital to get this done.”

That’s why it was so vital for Sebastian to be around some of the world’s best golfers last week. Why it was so vital for him to give each of them hugs, and for them to understand how they can make a difference in helping save his life.

“He used to go around hugging people, saying he had the power to heal with his hugs,” said his stepfather, Michael Fox. “We laughed it off as cute, but he would get upset with us for not taking him seriously. Even today, he still believes it.”

Sebastian has spent his life giving people, even complete strangers, these back-cracking healing hugs. Now it’s time for the rest of us to embrace him.

He needs more than a hug. He needs to be cured. He needs to become that typical, rambunctious little boy again.

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