'Garden of Dreams' Creates Memorable Day for East Quogue Family

Communicating how he feels has never been easy for Hunter Gladding.

The 7-year-old East Quogue resident was diagnosed with late infantile metachromatic leukodystrophy when he was 18 months old. The neurological degenerative disorder is extremely rare and also terminal, and there’s currently no cure. As a result of his condition, Hunter is nonverbal and is a quadriplegic, severely limiting what he can say and do, and how he can express himself.

But on January 26, it was clear for anyone to see that he was having the time of his life.

Sitting on his father, Alex’s lap, alongside his mom, Briana, and older brother, Cooper, 10, Hunter flashed a wide smile of pure joy and ecstasy from inside the penalty box, where he sat with his equally thrilled family as he took in the sights and sounds of the New York Rangers warming up for their game against the Colorado Avalanche at Madison Square Garden. Later on, he was surrounded by several other family members — two sets of grandparents, as well as aunts and uncles — all clad in Rangers gear as they watched the game from a luxury suite in the Garden.

The evening also included a meet-and-greet with several Rangers players, including former player Cristoval “Boo” Nieves and current star Chris Kreider.

The magical night for the Gladding family was made possible by the Garden of Dreams, a nonprofit dedicated to bringing life-changing opportunities to young people facing illness or financial challenges, as well as children of uniformed personnel who have been lost or injured while serving our communities. Since its founding in 2006, the foundation has impacted more than 440,000 young people and their families.

The Gladdings caught the attention of Garden of Dreams after photos of a well-coordinated Rangers-inspired family Halloween costume circulated online. Alex, Briana and Cooper were dressed as Rangers players, but Hunter stole the spotlight after his father hand made an apparatus that transformed his son’s wheelchair to look like a Zamboni machine.

During the Christmas season, the Gladding family’s Elf on the Shelf — dressed in its own mini Rangers jersey — left an important note one morning for Hunter and Cooper, instructing them to bring the family to Madison Square Garden on January 26, and say that Santa sent them, and there’d be a “special surprise” for them there.

According to Briana, the Garden of Dreams staff fulfilled that promise — and then some.

“They gave us a private suite with catering and our own bathroom, and that would’ve been enough,” Briana said. “But then they took the four of us down to the penalty box, where we sat during practice, and the players waved to the kids, and they got to be on the Jumbotron throughout the game.”

That was just the beginning. The family was also invited into the broadcasting booth during a commercial break, and also got to check out the ice-level broadcasting booth located next to the penalty box. Rangers alum Nieves came to the suite to spend time with the family, and presented Hunter with his own official Rangers team jersey, with his name on the back. The family was given “bags full” of merchandise, and also ended the evening by meeting several of the players when they were on their way out of the locker room after the game — which unfortunately ended in a last-second loss for the Rangers, but it did not dampen their experience at all.

It was a thrill for the entire family, all of them devoted Rangers fans.

“We watch every game,” Briana said. “And we discuss deals and trades over dinner.”

Briana said she was particularly happy not only with the extraordinary VIP treatment and all the perks the foundation packed into the evening, but also with the way they made it as smooth and easy as possible for Hunter.

“They were so good about being on top of and aware of Hunter’s medical needs and his mobility restrictions,” she said. “Making sure he could have his wheelchair wherever we went or, if it couldn’t fit, making sure we could take him out and he’d be comfortable.”

It was a night and a moment that the family will never forget. Creating those kinds of memories is a big priority for the family. When Hunter was first diagnosed with leukodystrophy, the family was told he had only a year to live. The Gladdings were reeling from the news, unaware that in a very unlucky and cruel twist of fate, they had both, unknowingly, been carriers of the gene for the rare disease. Hunter was enrolled several years ago in a clinical trial through NYU that has prolonged his life by providing him with a synthetic version of the enzyme he’s missing and that led to the disease. Hunter goes into the city once every week for that treatment.

Several months ago, the Gladdings and the other 25 families, worldwide, with children who also have the condition were informed that the trial was going to be discontinued. They fought back and learned a few weeks ago that the trial would continue, but that the treatments would not be put forth to the FDA, meaning that any newly diagnosed children would not be allowed to participate in the trial.

The Gladdings know they are essentially on borrowed time, and they also know that the trial will never improve or cure Hunter’s condition. But they’ve done everything they can to make Hunter’s life full of joyous moments, and provide as much of a normal childhood for him as they can.

He makes regular visits to East Quogue School to spend time with his second grade classmates, and is always the most popular student on the back field during the school’s field days and other school-wide events. He is limited physically, but not cognitively, and he has found ways to showcase his unique personality. If his older brother talks back to his parents, for instance, or gives them an attitude, and then gets in trouble, Hunter will laugh, Briana said.

“He has a personality,” she said. “He smiles, and he expresses displeasure, so you definitely know if he’s not happy.”

He also has a vision communication device that assists him in making choices and can, in essence, speak for him. He uses that device to keep up with his schoolwork as well.

Briana likened Hunter’s condition to Lou Gehrig’s disease.

Throughout the experience at the Garden, Hunter was engaged and excited, Briana said.

“He was smiling and laughing and you could tell by his eyes that he was watching everything around him. If he wasn’t interested, he would have closed his eyes and gone to sleep. But he was having so much fun. And he does vocalize when he’s excited — he kept squealing.”

The experience was such a thrill that by the third period, Hunter was worn out and had to take a quick power nap before meeting the players after the game.

That might have been his favorite part of the night.

“His eyes were huge,” Briana said. “I really think he understood what was happening around him. They would take his hand and fist bump him.”

It was equally thrilling for Cooper, a fifth-grader at East Quogue School.

“Cooper was like a puddle on the floor,” Briana said of her older son’s excitement at meeting the players, who she said are “so much bigger than you give them credit for” when you meet them in person.

The Garden of Dreams Foundation made it possible for Briana and Alex Gladding to stay true, in the best way possible, to a promise they made years ago, when Hunter was diagnosed.

“We made a commitment six years ago that we’d make Hunter’s life as full as possible, that we’d make each day count,” Briana said. “I think we do a good job with that. It’s not easy, and it’s exhausting, but we push every day for him to have as much as possible.

“We’ve had many more days with him than we thought we would,” she continued. “His life won’t be as long as mine. He’s very medically fragile — one chest cold could be the end. But if every day counts, this was a really good one.”