ELMWOOD PARK, N.J. — A trip to Washington, D.C. for his 46th birthday represented a full reversal for Elmwood Park resident Jeff Leider.
Leider, who founded Let Them Be Little X2 Foundation. has often traveled to the nation's capital to fight for clinical trials and legislation to support the study of rare diseases.
His two sons, Jason and Justin, were diagnosed with Hunter Syndrome five years ago. After a lot of effort, both are in clinical trials and doing well, their father said.
The outlook did not look as positive years ago, so to have the family together on a fun trip made Leider happy.
It also provided a learning experience for his children.
"It's very important to show them that people in Washington, they're not monsters," Leider told Daily Voice. "They're normal human beings just like we are. They smile, and they're nice people."
The family had some trouble enrolling Jason in a clinical trial there, leading to more tense visits.
The birthday trip was much more upbeat: The Leiders saw the White House and met Sen. Bob Menendez. They came close to President Barack Obama, only a room away, and saw his dog Bo on a walk outside.
Hunter Syndrome is a genetic disorder that can cause skeletal deformities and developmental delays. It can shorten lifespans to 15 or 16 years, although clinical trials are hoped to extend that timeframe.
His boys may be stable, but Leider continues to help others impacted by the condition as part of the
"It takes many ingredients to make a great dish," he said. "Our ingredients to make these boys make it, it was a lot of people involved."
MORE INFO: http://jasonandjustinsjourneyx2.com
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