Sports

11-year-old with Alzheimer’s is Albany hoops’ star recruit

Will Brown met JP Honsinger at a fundraiser that was organized by Brown’s wife, Jamie. At that time, Brown learned of the terrible disease with which the 11-year-old Honsinger is living.

“I was just like, life isn’t fair,’’ Brown recalled recently in an interview with The Post. “Here’s a kid trying to do the right thing, from a great family and this is what he has to deal with. Here’s an innocent young kid who has every reason to live his life. It’s just sad.’’

Brown wondered, “What can I do?’’ Brown, the basketball coach at the University at Albany, never had heard of Niemann-Pick Type C disease, otherwise known as childhood Alzheimer’s. Brown was told the disease is extremely rare, affecting perhaps 500 people in the United States, and that it is incurable.

JP HonsingerMichael P. Farrell/Times Union

Brown took a look at JP, only one year younger than his oldest son, 12-year-old Jackson, and knew he had to do something.

And so he recruited JP Honsinger.

“The platform I have, based on the job that I have, I think I owe it to people like JP and the Honsinger family that if I can do something, I need to do something,’’ Brown said.

A seemingly ordinary press release from the school went public a few weeks ago, announcing the Great Danes, the two-time defending America East Conference champions, had added three players in the early signing period. One was Joe Cremo, a 6-foot-4 guard from nearby Scotia.

“We expect Joe to be a guy who can play multiple positions for us,’’ read Brown’s quote. Kyle McKinley, from Minnesota, was described by Brown as “a legit 6-10 big man.’’

I tell people I smile on the outside, but I’m rotting on the inside, rotting watching my son deteriorate.

 - Jay Honsinger

The third player, from just north of Albany in Clifton Park, and Acadia Middle School, was 5-foot JP Honsinger, 11, described in the release by Brown as “the youngest player we have ever signed’’ and as “a lightning quick point guard with big time range on his jump shot. He is a pesky defender who has a tireless work ethic. As our point guard of the future we are going to rely on his exceptional leadership qualities. Nobody in the country will be signing a player with JP’s toughness.’’

The release also stated the sixth-grader had been diagnosed with Niemann-Pick Type C disease and attached a link to learn more about JP and to support his cause: http://www.jamminforjp.com.

The release not only was sent out to the Albany media, but also to national outlets. Brown went to practice that afternoon, as usual, and afterward, “I had a million emails, text messages, tweets and I’m looking at who it’s from and I’m like, ‘This is tremendous,’ ’’ he said.

Signing JP to the letter of intent was Brown’s idea. He hoped to raise awareness about the disease, raise funds and give a young boy and his family some hope, attention and affection.

The story was picked up nationally by USA Today and CBS Sports. Jay Bilas of ESPN praised the signing on Twitter and “SportsCenter” took notice. Brown figured he didn’t have to clear this unusual maneuver with the NCAA and assumed that often-prickly governing body was fine with it when JP’s signing was retweeted by the NCAA to its 1.3 million followers. Brown, in keeping with NCAA guidelines, made sure JP, like all other recruits, signed the letter of intent at his home and then it was sent in via fax to Albany’s basketball office.

JP signs his letter of intent.Courtesy of the Honsinger family

“The biggest thing from my end is the awareness,’’ Brown said. “His dad was crying all day. They could never afford to have the media coverage they’ve received up to this point.’’

Some actions are indeed priceless.

“They put him on the team, you know?’’ JP’s father, Jay Honsinger, told The Post. “It’s a good story for a tragic, terrible thing that’s happening.’’

The date JP was diagnosed — Sept. 18, 2013 — is etched in Jay Honsinger’s memory. “Until the day I die,’’ he said. He describes his son as “A happy kid, he’s got a twinkle in his eye, always smiles, loves people. He’s got a little bit of a balance issue. He’s 11 years old but he’s got a second-grade reading level because his brain’s dying. He has improved, but he’s fallen behind other kids. Most kids grow and develop, every day his brain dies a little bit.’’

JP has loved and played sports since he was 3 years old. Every morning for an hour before the school bus arrives, he plays basketball or lacrosse or street hockey with his dad.

“He used to be really good in baseball,’’ Jay Honsinger said.

JP is undergoing Compassionate Use Protocol — experimental treatments — in an attempt to stabilize his symptoms.

“If we don’t do anything, he dies, so we might as well try something,’’ Jay Honsinger said. “That’s on my conscience. I tell people I smile on the outside, but I’m rotting on the inside, rotting watching my son deteriorate.’’

Although there are about 500 known cases, there might be as many as 1,000 people worldwide with Niemann-Pick Type C disease.

“NPC is caused by the inheritance of defective genes — NPC1 and NPC2 — involved in cholesterol metabolism,’’ said Dr. Edward H. Schuchman, vice chair for research, Department of Genetics & Genomic Sciences at the Mount Sinai School of Medicine. “Patients who inherit two copies of either of these genes — one from each parent — will develop the disease. It is always fatal, although there is considerable variability among patients. Current efforts to treat the disease are based on reducing cholesterol and other lipids [or fats] in the organs of NPC patients. At the present time, there is no cure for the disease, although a combination of several different drug therapies may slow the progression.”

JP sits on the bench before Albany’s game Wednesday.Michael P. Farrell/Times Union)

The disease is so rare, Schuchman said, that for many years most researchers and drug companies ignored it. It was “put on the map,’’ Schuchman said, by Ara Parseghian, the former Northwestern and Notre Dame football coach, who saw three of his grandchildren die from the disease.

Brown, 43, is in his 14th season as Albany’s coach and has taken the Great Danes to the NCAA Tournament four times. For the team’s home opener against NJIT, JP Honsinger took part in a ceremonial jump ball and sat on the bench for the Great Danes’ victory.

“He’s got an open invitation to any practice he can make, every home game he can get to, it’s all predicated on how he’s feeling,’’ Brown said. “Health permitting, he’ll be with us every step of the way moving forward.’’

Previously, JP has served as ball boy and water boy for the Albany lacrosse team and Jay Honsinger calls the lacrosse coach, Scott Marr, being “like a second father to JP, and Will Brown has become the same thing. They’re just great people.’’

Jay and his wife, Donna, also have a 14-year old daughter, Mollie. All are now fans of the Great Danes.

“When I talked to him [two weeks ago] I said, ‘What do you got planned today?’ ’’ Brown said. “Happy and upbeat he goes, ‘I’m going to get a poke.’ A poke is basically, they’re hooking him up to all these different IVs pumping him up with stuff to try to help him. It’s something he goes through every week on a regular basis. Here’s a kid who’s upbeat about going to get a poke and here I am thinking I got problems.

“It’s funny how the sports world can send such a powerful message and how it can impact people in the community.’’

As for JP, the hubbub is what it is.

“The media attention, he doesn’t care about it,’’ his dad said. “All he wants to do is play ball.’’