A Merrick, New York, father who has spent hundreds of thousands of dollars chasing an experimental cure for his five-year-old son's rare genetic disorder got the break he had been waiting for Friday, when House Speaker Mike Johnson signed the bipartisan Small Business Innovation Research Act and sent it to President Trump's desk.
Andrew Jedlicka, an NYU business professor, has watched his son undergo treatment at a Queens lab for the past five months, treatment for KBG syndrome, a disorder so rare that only about 800 cases are known worldwide. Experts believe the true number is higher because the condition is widely underdiagnosed. The lab in Long Island City is, by Jedlicka's account, the only facility on the planet capable of treating and possibly curing the disorder.
Without renewed federal funding through the Small Business Innovation Research program, that lab's future is in serious doubt. And until Friday, Congress had let the program sit dead for months.
The Small Business Innovation Research program lapsed in October 2025 after Congress failed to reauthorize it. The program channels federal dollars to small businesses and research labs conducting advanced medical research, exactly the kind of work underway at the Long Island City facility where Jedlicka's son receives care.
The total cost of the boy's treatment has already topped $1.2 million. Jedlicka told the New York Post he has personally covered hundreds of thousands of dollars out of pocket. The lab, he said, would need roughly another million dollars just to stay afloat.
That is not a rounding error for a university professor. It is the kind of financial burden that makes a family's survival dependent on whether Washington can get a bipartisan bill across the finish line, a task that, in this case, took half a year longer than it should have.
Jedlicka put the stakes plainly:
"If the lab closes, everything stops, and we don't get the cure."
The Senate passed the reauthorization bill on March 3. The House followed on March 17. But the bill then sat, unsigned by the speaker, for weeks, even as the lab's funding clock kept ticking.
Rep. Laura Gillen, a Long Island Democrat, said she had been urging Johnson to push the legislation to the president. On Wednesday, two days before Johnson finally signed, Gillen wrote to the speaker pleading for him to move the bill along. Johnson's office did not respond to the Post's request for comment.
The delay fits a broader pattern. Johnson has faced repeated pressure from multiple directions over the pace and sequencing of legislation reaching the president's desk. His handling of the recent DHS funding fight drew criticism from Freedom Caucus conservatives who felt he moved too slowly, or in the wrong direction, on homeland security spending.
Gillen framed Friday's signing as a hard-won result:
"I'm proud to have helped push this funding for vital medical research through Congress after months of a partisan stalemate in the Senate and weeks of inaction by the speaker of the House."
She added that every day without reauthorization "threatened to end lifesaving treatment for Long Islanders and others across the country."
The Small Business Innovation Research Act, if signed into law by President Trump, would restore funding to dozens of small businesses and research labs across the country conducting cutting-edge medical work. For Jedlicka, it would mean the Queens lab treating his son could continue operating.
But the bill's arrival on the president's desk does not guarantee a signature. The White House did not respond to the Post's request for comment. And broader budget pressures loom: Trump's 2027 budget proposal includes cuts to federal health and research funding, a reality that could complicate the long-term outlook for programs like this one even if the reauthorization becomes law.
The tension between fiscal discipline and research funding is real, and reasonable people can disagree about where to draw the line. But the specific case of a five-year-old boy with one of the rarest genetic disorders on earth, receiving treatment at the only lab in the world that can provide it, is not an abstraction. It is a concrete test of whether Washington can deliver results for the people who need them most.
Congressional dysfunction over funding has become a recurring theme in recent months. The House passed a DHS funding bill earlier this year on a narrow vote while the Senate stalled, and the broader pattern of legislative gridlock has left agencies and programs in limbo well past their deadlines.
Jedlicka's son was diagnosed with KBG syndrome last year. The condition is genetic, and the family turned to the Long Island City lab for an experimental treatment that has now been underway for five months. Jedlicka has not publicly identified his son, and the specific nature of the experimental therapy has not been disclosed.
What is clear is the financial weight. More than $1.2 million in total treatment costs. Hundreds of thousands from the family's own pockets. And a lab that needs roughly a million more dollars to keep going.
Jedlicka told the Post he was relieved the bill finally reached the president's desk:
"I'm relieved that it finally reached the president's desk, and I hope that it is signed into law very soon so that we can continue the great work we're doing for the KBG community."
Relief is the right word. Not celebration. The program lapsed in October. The Senate acted in March. The House followed two weeks later. And the speaker's signature came only after a public plea from a congresswoman. That is not a system working well. That is a system that nearly let a child's treatment collapse while a bipartisan bill gathered dust.
The broader funding battles in Congress, including Senate Democrats declaring House stopgap measures dead on arrival, have consumed enormous amounts of legislative energy. Partisan stalemates over homeland security, immigration enforcement, and agency budgets have dominated the calendar. Meanwhile, a straightforward reauthorization of a small-business research program sat idle for months.
That is a failure of prioritization, not ideology. The Small Business Innovation Research program is bipartisan. It passed both chambers. No one opposed it on principle. It simply was not important enough to move quickly, until a father's story and a congresswoman's letter forced the issue.
Johnson has faced pressure from all sides on the sequencing of legislation this session. His decision to reject Democratic attempts to strip ICE and Border Patrol funding from DHS bills was the right call on the merits. But the sheer volume of funding fights has created a backlog where even noncontroversial bills can languish.
The Small Business Innovation Research Act awaits either President Trump's signature or a veto. For a Merrick family with a five-year-old son and a treatment that cannot wait, the answer matters more than most things Congress does in a given week.
Earlier this year, Johnson predicted a quick resolution to a government shutdown that dragged on far longer than expected. The pattern is familiar: optimistic timelines, slow execution, and real people left waiting.
When a bipartisan bill that funds lifesaving research for children takes six months to clear a Congress that passed it overwhelmingly, the problem is not partisanship. It is a government that has forgotten who it works for.
