A determined Lengthy Island dad is begging US lawmakers to revive long-stalled federal cash to proceed funding the one lab he says is able to treating his 5-year-old son’s extraordinarily uncommon genetic dysfunction.
Andrew Jedlicka, a New York College enterprise professor and father of three from Merrick, has been taking his youngest baby to the middle in Lengthy Island Metropolis, Queens, for the previous 5 months to obtain a brand new experimental remedy he stated may totally treatment his son.
The boy, whose dad requested that his title be withheld, was recognized final 12 months with KBG syndrome, a not often seen genetic dysfunction linked to developmental delays, speech points and seizures.
There are solely about 800 recognized instances worldwide,
After his son’s prognosis, Jedlicka stated he was fortunate sufficient to find that the one laboratory on the earth with the flexibility to probably treatment his son was proper in his yard.
“I assumed the toughest a part of this journey can be to discover a treatment and a remedy for my son,” Jedlicka instructed The Put up.
However with out renewed federal funding from the Small Enterprise Innovation Analysis program, which lapsed in October 2025 after Congress didn’t reauthorize it, the lab must shut its doorways March 1, he stated.
The full value of Jedlicka’s son’s remedy on the heart has been greater than $1.2 million. And the lab would roughly want about one million extra {dollars} on high of that simply to remain afloat.
With out this system being renewed from the federal government, Jedlicka’s household can be liable for the whole worth of remedy whereas the lab would wish to show to personal funding to maintain its doorways open.
“If the lab closes, every thing stops, and we don’t get the treatment,” stated Jedlicka, who has already spent lots of of hundreds of {dollars} of his personal cash on the remedy.
“It says quite a bit about healthcare in the USA,” Jedlicka instructed The Put up.
The hold-up lies primarily with GOP Sen. Joni Ernst of Iowa, who helms the Senate Small Enterprise and Entrepreneurship Committee and is pushing for sweeping reforms earlier than she is keen to log off on the funding.
These reforms embody lifetime caps for recipients of grants from the fund and stricter safeguards to stop corporations with Chinese language ties from accessing the cash.
“Too many massive corporations — not actually small companies — drain tens of millions of taxpayer {dollars} by churning out white papers [research submitted by marketers] as a substitute of turning the taxpayer’s investments into actuality,” Ernst beforehand instructed the Senate.
Jedlicka stated he understands the senator’s push for reform however believes households like his are being regarded over.
He stated he shall be personally touring to Washington within the coming weeks to foyer for the funding.
“I don’t disagree along with her issues,” he stated of Ernst. “However right here we’re virtually 5 months later, and the grant hasn’t been reauthorized.”
New York Rep. Laura Gillen, who represents the Merrick neighborhood the place Jedlicka’s household resides, fired off a letter to Ernst urging her and Senate management to strike a deal earlier than households resembling Jedlicka’s are left with out choices.
“With no reauthorization or passing the clear one-year extension, this lab shall be pressured to shut and my constituent will now not be capable of obtain the specialised care they want,” Gillen wrote.
Ernst’s camp didn’t instantly reply to a Put up request for remark.
