47°
Lately, that's how progress looks for 17-year-old Jason Leider, a former Elmwood Park resident who lives with Hunter Syndrome, like his 15-year-old brother, Justin.
The genetic and degenerative disease comes with a life expectancy of between 15 and 20 years, according to the boys' father, Jeff Leider. The disease impacts the entire body, most notably, making it impossible to break down waste.
Leider — who recently moved to Florida from Elmwood Park with his wife, Deanna, Jason, Justin, and their daughter — credits two enzyme-replacement medications for the boys' improved quality of life. He says one in particular is what gave the family confidence to spring for a seven-hour, trachea expansion surgery for Jason at Cincinnati Children's Hospital.
More than $15,000 had been raised for the Leiders on a GoFundMe launched for Jason's surgery as of press time.
While the surgery was successful, it was not without complications: A hole in Jason's lung, swelling from being intubated, and overall stress of being in the hospital, away from home.
Jason was removed from the ventilator over the weekend, and his father is hopeful that an even better quality of life is just around the corner.
"He's awake and breathing on his own," Leider said in a call with Daily Voice from the hospital. "The stress is just at an all time high. A lot of emotions. It's a lot for any parent to go through."
For most of their lives, the boys have been on two medications, Elaprase, and a post-trial drug called SHP-609. The drug was developed by a company called Takeda, but failed to meet FDA approval last year.
The Leider boys are among approximately 40 other children enrolled in the trial, and their father said the vast majority of children on the drug have seen excellent success.
Justin was diagnosed with Hunter Syndrome sooner in life than Jason was, so he's been receiving treatment for more years of his life than his brother — and is on the brink of getting his driver's license.
While Jason is non-verbal, his smile speaks volumes, his dad says.
"He lights up any room with his smile," Leider said. "It's what connects everyone. The way he handles himself, people fall in love with him."
Despite its failure to gain FDA approval, Takeda has vowed to keep the children doing well on their drug. But the thought that Takeda might stop it looms over Leider like a dark cloud.
"Without it, my sons wouldn't be here," Leider explained to Daily Voice.
After Jason was taken off of the ventilator on Saturday, some more of the those hypotheticals popped back up for Leider.
"It's a relief he's off, but on the ventilator he was calm, cool and collected," the worried father said. "Me and my wife were able to relax, stress-free. But since they took him off of everything, the stress is at an all-time high."
How is Jason going to do? What is his longevity once he's resumed normal life?
Will Takeda decide to stop the drug?
"Even though Takeda tells us all the right things, we always have in the back of our mind, when is the time going to come where they say we’re going to stop it?" Leider said.
During the pandemic, Leider moved his family from his hometown of 54 years, Elmwood Park, to Florida. A team of doctors at Hackensack Meridian told him the air near a beach would be better for the boys' breathing.
While the move was an emotional one for Leider, he didn't think twice about it if it meant a better life for Jason and Justin.
"I live in Florida but my home is in Elmwood Park," he said. "I'm getting choked up, I miss it that much but you need to do what you have to for your children."
Click here to donate to the Leiders.
Click here to follow Daily Voice Hillsborough and receive free news updates.
