18 Mar Sebastian Velona Inspires with Healing Hugs at Genesis Open
On July 18, 2003, Sebastian Velona entered the world in Valencia, Calif. in a perfect way, as a perfect baby. His mother Teri Fox could not have hoped for anything more.
In his early years, “Sebi,” as he’s affectionately known, grew up in accordance with his birth that preceded those years, perfectly.
“He was a perfectly normal kid,” said his step-father Michael Fox. “He played, baseball, video games and got along with everyone he was around.”
“When our son Jaxon was four, Sebi was five. They played tee ball together,” said neighbor and friend Megan Gore, wife of PGA TOUR member Jason Gore. “Sebi was the most athletic, rambunctious kid on the team. He hit every ball and was just a superstar. That’s how I picture in my mind Sebastian being younger.”
A picture, however, can often be cunning, by offering but a glimpse into what once was.
At the age of four, Sebi experienced his first seizure. By age six, he was diagnosed with epilepsy and retinitis pigmentosa. His vision began to fail.
“And then, pretty rapidly, other setbacks came with a snowball effect,” Michael said. “There was cognitive decline and mobility issues. We knew there must be something to connect all of these different symptoms.”
In addition to losing his vision, the ability to walk and talk become increasingly difficult.
Only after DNA testing were doctors able to determine that the perfect baby, now age eight, had Batten Disease, an extremely rare and often fatal neurodegenerative disorder which begins in childhood. The particular form of Batten Disease Semi became stricken with was CLN8.
According to the curebattencln8.org website, “Neuronal ceroid lipofuscinoses (NCLs) are characterized by genetic mutations which disrupt cells’ ability to dispose of wastes, resulting in the abnormal accumulation of certain proteins and lipids (fats) within the nerve cells of the brain and other tissues of the body, resulting in progressive neurological impairment including developmental regression, seizures, blindness, behavior changes and dementia.”
“I guess the only way to describe the reaction would be paralyzing,” said Michael. “When the diagnosis was first given to us, the first question was, ‘what’s the cure, what can we do.’ And, the response was ‘nothing, there’s no cure, there’s no hope.’ They said there’s nothing we can do, that he was going to deteriorate and then die. That’s devastating.”
Devastated, but far from defeated, Sebi’s family embarked on a journey defined by equal parts fear, hope and determination. Determination would grant their hope legitimacy and a fighting chance.
“We had to beat down the door with the genetic team and insurance groups to get this DNA testing done,” Teri said. “Once we had the diagnosis, we sat in a really large beautiful boardroom at UCLA with a whole team of doctors, very intimidating, that didn’t look happy. Our neurologist came in and sat. We had become very good friends in the past years and he was crying.”
For the time being, perfection was but a picture of what had once been.
“This past year, we learned more about the CLN8 gene,” Teri said. “We found out that by the time he’s 20 years old, possibly younger, he would be immobile in a wheelchair and on a feeding tube until he deteriorates. Then, he would die.”
About the time they faced the reality of there being no cure for what Sebi had, hope pierced a hole into the shrinking, darkening bubble that had become their world.
Hollywood film producer Gordon Gray has been credited for numerous movies with odds-defying narratives, such as “McFarland USA,” “Miracle” and “Invincible.” But, like a picture marks only a time and place from the past, movie scripts can be crafted in a way that doesn’t always fall in line with reality. In real life, Gray wasn’t able to manipulate the reality which faced his two daughters. Gwenyth and Charlotte were both diagnosed with Batten CLN6.
“Batten CLN6 is very similar to CLN8, it just has earlier age of symptom onset,” said Michael. “He was very instrumental in working with these doctors to come up with this gene replacement therapy and his daughters have been treated. So, they’ve taking a lot of that same technology that they learned and developed in treating the Gray daughters to put together the treatment for CLN7 and 8.”
As it turns out, the technology proved successful in the treatment of Batten CLN8. But, when the Foxes learned of the $3.5 million dollar price tag, they lost virtually all remaining oxygen that had managed to last in their deflated, collective being.
“Five months goes by and we get that call. All of a sudden, the doctor’s very excited,” said Teri. “They were very successful with Charlotte and Gwenyth’s gene therapy they used on them. They tested the CLN8 gene and it fit into the vector, which is a delivery system. Doctors were given the go‑ahead with a staggering $3.5 million price tag on it, because it’s not covered, there are no grants specifically for Sebastian. But, if we wait until it is funded, it will be too late for him. They will be able to treat it someday, but Sebastian will not be a candidate.”
The astronomical cost to cure Sebi covers research and development, FDA approval, treatment and hospital stays, among countless other treatments, rehabs and medicines. Insurance is not an option.
“They put together the genetic team that made this miracle happen,” said Teri. “His two daughters were both treated and the disease will stop. It’s too early to tell if all the damage can be reversed, but what they can say is because Sebi’s so young, he can get his speech back over time with the right type of therapy. His walking, there’s a gray matter in the brain that’s caused his hips to not communicate right, which is why they start to turn in. But, his brain could be re-taught to have him walking normally. That all that can be done, but for a price that is out of reach right now.”
“It stops you dead in your tracks,” said Michael. “What do you do? You know if you don’t come up with the money to get the treatment, he’s going to die. He’s going to deteriorate beyond help. So, you go through a stage of just complete shock and paralysis, where you don’t know what to do. Somehow, though, you just have to pull it together.”
“It felt like our son was being held for ransom,” said Teri. “We begged the doctors, ‘Please help us. We’ll sell everything, please just give us this opportunity. We can’t have an opportunity out there without it being offered to us.’”
Interestingly, the end product is an epidural shot through the spine and into the brain. It takes upwards of a year to make the gene right now, an amount of time certain to be decreased with further research.
“Literally, overnight we got the best news in the world and horrifying, very scary news with the price tag,” Teri said. “So, how do you live with that? We’re just scrambling trying to do anything we can to raise funds.”
The biggest issue facing Sebi and the Fox family is time. Specifically, the lack of it. With his ability to see and speak now nearly gone entirely, coupled with a rapidly decreasing ability to walk, best guesses are that he has a year at most to receive the treatment.
Which brings the story to this week’s Genesis Open at famed Riviera Country Club. Given the PGA TOUR’s commitment to charity, it became a no-brainer for Jason and Megan Gore to reach out to professional sports’ most charitable organization.
“Jason and I spoke about it last week and we thought, “Gosh, the PGA TOUR’s here. They do amazing work for all kinds of charities,” said Megan. “We have all these TOUR friends who we’ve been in this life with for 20 years, they’re here this week, it’s Valentine’s Day, it’s Healing Hugs, Sebi’s here, we’re all here now and do not have time to wait another year.”
After reaching out to players, friends and officials of the TOUR, staff of the Genesis Open and the Tiger Woods Foundation (host organization), the Gore’s arranged to have Sebi and his family on site Wednesday to get up close and personal with the game’s biggest stars. The result, however, became more of an opportunity for the game’s greatest to get up close and personal to Sebastian Velona.
From word of mouth to posters in the players’ locker room, so much promotion had been laid out that no player passed on the chance to visit with Sebi, including PGA TOUR Commissioner Jay Monahan. On Wednesday night, TOUR players had lit up their social media accounts, showcasing pictures with Sebastian in a call for help.
“This is as close as it’s ever gotten to really affecting somebody that we love in our life that really needed the help,” said Megan. “The amount of awareness that this could bring to his cause may be experimental, but these guys are making it exceptional. This is a slam dunk for their family.”
“Right now, right now it’s key to spread the word and have a big voice and get the message out,” said Michael. “Thanks to the Gores, this is exactly the kind of help we need…the big audience, the big voice to spread the word and get this out there.”
While their attention is certainly on finding the funds to extend and improve Sebi’s life, a broader goal is to pave the way for other families who are either now dealing with similar situations or may be later in life.
“We’re going to take the money we raise and pull in other CLN8 families to help stop this disease for all those afflicted by it with his virus that they’re making right now,” said Teri. “They’ve already duplicated the gene and they’re making it and growing it, which takes about a year process. But the goal is to help other families to not have to raise quite as much as us. I our case, though, we don’t have time to wait, because his disease is fatal and he’s getting worse by the day. If he gets much worse, they simply won’t be able to treat him.”
The Foxes, who admittedly weren’t savvy on social media, are quickly becoming cyberspace renegades.
“We immediately started putting together social media, the website, the Sebastian Velona Foundation, getting a video made to tell our story….all since January,” said Michael. “So, it’s brand new, but we’re getting there.”
The Foxes may be getting there, but the $3.5 million cresting wave is a daunting force to reckon with. So that they may not be restricted to memories from pictures of what once was, help to save a life is needed desperately. The money being raised isn’t for a roll of the dice, it’s a sure thing. One way or the other, it will be a sure thing.
“I look at it like a snowball,” said Michael. “Now, it’s a little snowball and every day that it rolls down the hill it’s getting a little bigger. People are helping. And because of that, there is a light at the end of the tunnel. That’s a motivating factor now. We can see the light. We just have to get to it.”
Life for the Foxes may never be perfect again, but for a time, in memories and pictures, it was.
Today, survival at all costs is perfection. Determination is perfection. Hope is perfection. Help from fellow man is perfection. The creation of new pictures and memories is the payoff from determination and hope, but most of all, it is from help.
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