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What you need to know for 10/21/2017

Clifton Park family raises money to fight son’s rare disease

Saratoga Summer

Clifton Park family raises money to fight son’s rare disease

Afflicted with Niemann-Pick disease Type C, Jay Patrick “JP” Honsinger is undergoing a drug treatmen
Clifton Park family raises money to fight son’s rare disease
Jay Honsinger of Clifton Park meets members of the band Chicago backstage Tuesday at the Saratoga Performing Arts Center.

At a glance

The Honsingers are also raising money online through http://fundabilities.com/jps-team. The site will be accepting donations and will automatically enter each donor into a raffle on Aug. 24 for a Samsung Galaxy tablet.

Jay Patrick “JP” Honsinger seemed no different from any of the other kids inside the Saratoga Performing Arts Center early Tuesday evening.

The 11-year-old boy played with friends and wandered around the grounds before the Chicago and REO Speedwagon show. He appeared like a healthy, active boy reveling in the last days of summer break before the start of class at Acadia Middle School.

He didn’t appear like a child fighting a rare and lethal metabolic disorder with no known cure.

“He’s excited to be with his friends,” said his mother, Donna Honsinger. “He’s not fazed by any of this. He just goes with the flow.”

Afflicted with Niemann-Pick disease Type C, JP is undergoing a drug treatment at the Albany Medical Center Hospital under the compassionate use protocol. The treatment, which involves the boy receiving an injection in his spinal cord every two weeks, is still undergoing testing and it’s not clear whether it will either halt the neurological degeneration he’s experienced since fall or simply forestall an inevitable decline.

“They’re still studying the drug, but we’re not waiting,” said his father, Jay Honsinger. “We can’t wait.”

Nor can research into the rare affliction. The Clifton Park family has raised roughly $80,000 to aid the search for a cure since their son’s diagnosis in September — a mission they continued at the SPAC concert with a little help from the main act.

When family friend Lisa Partlow — a huge Chicago fan — learned the band would return in January, she suggested the family team up with them to raise money for Niemann-Pick research. For 18 years now, the band has donated a portion of its ticket sales to the Ara Parseghian Medical Research Foundation, which seeks a cure.

“We were able to connect and make it work,” she said. “It’s an amazing opportunity.”

On Tuesday, the Honsinger family set up a booth at the concert, selling raffle tickets for sports memorabilia and items signed by the band in order to raise money for the cause. JP and several other children with Niemann-Pick were also given a chance to visit backstage prior to the performance.

JP has already been named an honorary member of the Troy Police Department and the University of Albany’s varsity lacrosse team. Last year, UAlbany players placed purple and gold “JP” stickers on their helmets to recognize the ailing youth.

“These college kids, they kind of adopted him,” said his father.

Niemann-Pick is a degenerative disease that usually strikes young children. Only one in 150,000 children are diagnosed with it, many before the age of 10.

JP’s illness first began as a slight loss of coordination, but has progressed. He’s lost 25 percent of his body mass over four months and is gradually losing his hearing.

The effect on the family has been equally devastating, as they watch the progression of the disease and their son’s struggle. The Honsingers are keeping hope that the latest drug treatment will help him manage the disease.

“We think it’s stabilizing, but we just don’t know,” his father said.

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