In a world of doubt, today we focus on hope.
We’ll breathe a collective sigh of sadness, as each and every one of us reflects how good we have it, and just how challenging life can be. Possibly, together, we’ll continue to make a difference in a place that deserves it like no other; the temporary hope for a sick child. Because, today, we’ll learn more about JT.
Many of you read the recent story published in B.A.S.S. Times about Jason and Tara Borofka and their adorable son, JT. Author Christopher Decker did us all a favor by bringing the Borofkas' story front and center in our world. I needed more, and simply couldn’t let this story settle.
JT Borofka was born with one of the rarest diseases in the world. But, as his father Jason informed me, diagnosis was anything but ordinary.
“It was a living nightmare,” Jason commented. “At first, it was just a low iron level. Next thing we know, we’re told JT needs an emergency blood transfusion.” Not long after, the Borofkas found themselves “in the most intensive care rooms in the country. People wear astronaut suits when they come in your room.”
After an extreme blood test ordered by a leading hematologist, results were disheartening. JT suffered from TPI deficiency. The disease renders his body unable to process sugars correctly, decisively leading to muscle failure and ultimately death at a very early age. The Borofkas were told there was no real hope.
A panel of experts agreed that, while there was indication that TPI deficiency was a disease that could ultimately be cured, little was known about the illness. No real research had been done, no funding was designated to such, and even the most advanced doctors in the world had no choice but to throw up their hands.
“JT is one of 10 children in the world with TPI deficiency right now. It’s a one in 700 million case,” Jason added.
Despite the bleak outlook, the Borofkas were not going to give up. There had to be a way.
Endless online research showed a glimmer of hope. Dr. Michael Palladino, at the University of Pittsburgh, was specializing in research of neurological diseases like TPI deficiency. The main hurdle in such work was funding. According to Dr. Palladino, TPI deficiency is “certainly a curable disease," but “it’s likely not going to be studied by a pharmaceutical company … (as) there’s just never going to be a profit margin in a treatment for a disease that has so few patients.”
The Borofkas were not going to let profit margin decide the fate of their son.
“I wanted to know how much it would take to fund a lab,” Jason remembered, chuckling. Original estimates were $3 million, for starters. Undeterred, the Borofkas set out on the fundraising warpath.
Here’s where the world of bass fishing fits in. Benefit tournaments. Sales of T-shirts, sweatshirts, hats. Pro-autographed jerseys. The Wild West Bass Trail. ABA. All came to support and offer fundraisers for the Borofkas.
A hometown pizza shop event turned into a $35,000 donation. Prominent members of a local 4-H group gave more than $60,000 after a livestock auction. MMA celebrity fighters joined the cause. Kayak fishing ace Joe McElroy handed over his second-place prize money at a B.A.S.S. Nation event.
The media took interest. Good Morning America, Inside Edition, independent documentaries; all featured JT’s story, leading to more awareness and donations.
And this is where it gets good. Through the relentless hard work of the Borofkas and their support group, and with the increased attention by the fishing community, research of JT’s illness gained traction. In the eyes of the medical community, it garnered sufficient attention.
In time, and through the approval of a before unheard-of grant, the Borofkas were able to begin funding a lab at the University of Pittsburgh engaged in TPI deficiency research.
Early results were helpful. A compound was identified that helps raise TPI levels in JT’s blood.
Unfortunately, as could be predicted due to his illness, the Borofkas watched as JT’s health rapidly declined after a normally minor illness. Like all other children suffering from TPI deficiency, JT was confined to a ventilator and became largely immobile.
COVID issues surrounding medical research made bad matters worse. Essentially shut down due to protocol, the lab “lost a year of research” according to Jason.
The Borofkas also relocated to a larger home in order to better care for JT, moving from California to Texas. There, the state provides some much-needed funding, yet many expensive items still come out of pocket. The Borofkas push on, utilizing fundraiser help to offset costs where they can.
With the lab in Pittsburgh again up and running, what the Borofkas need most now is time. And money.
Jason gave an update: “Right now, they’re running research on a couple of hits (positive lab signs). There are seven projects that are looking positive, but we’re hanging on, waiting on an answer.”
That answer will likely take another year, or longer; time that JT is short on. Even then, the answer might not be what the Borofkas hope to hear. “We’ve got a ways to go,” Jason admitted.
Researchers, still, are optimistic and thankful, confirming their research is “far ahead” of where they ever thought they’d be at this time. They owe a lot of that to bass fishermen, for sure, as well as other believers in the cause.
Dr. Palladino suggests that, through the research brought on by JT’s case, people worldwide may someday benefit. “TPI is an essential enzyme. You need it to efficiently metabolize sugars,” Palladino noted in a statement. “It affects all the cells in the body.”
Time and money. Like most of us, I have but one to give.
Check out JT’s story at SaveJT.com. Donate if you can. Anything helps. In addition to a dropping off a little cash, I plan to do more.
Next week, here at the Balog’s Bass War column, I plan to announce a novel fundraising idea that I hope can gain some traction. It’s something we can all do, costs you nothing but your interest, and has potential to generate some capital for the Borofkas.
Oh, and might I mention that I’ll be selling off a $500 piece of equipment (that interests just about every serious bass angler) with the bidding starting at just $1?
Check back next week. But check SaveJT.com first.
(Joe Balog is the often-outspoken owner of Millennium Promotions, Inc., an agency operating in the fishing and hunting industries. A former Bassmaster Open and EverStart Championship winner, he's best known for his big-water innovations and hardcore fishing style. He's a popular seminar speaker, product designer and author, and is considered one of the most influential smallmouth fishermen of modern times.)
