A young patient instructs caregivers on treating the terminally ill

Focus on remaining life rather than impending death, terminally ill patient tells hospital staff.

Greg Bennett was a smart, athletic kid — straight As, a pitcher on his baseball team, popular.

Then adolescence happened. He started disrupting classes and failing to pick up on social cues when he was being annoying. His onetime friends began bullying him at school. His parents yelled at him for slacking off on homework.

But he wasn't just acting out. He had a rare genetic brain disorder, Bennett told a rapt audience at Mount Washington Pediatric Hospital on Friday.

"Unfortunately, there is no cure," the 19-year-old told about 25 members of the hospital's psychology staff. "Gradually, the disease takes over more of the body, intellectual functions deteriorate, hearing loss, blindness, inability to speak, seizures ... ultimately paralysis."

It was a chilling and even heartbreaking message coming from someone who, with his quick laugh and sunny demeanor, looks like an entirely healthy teenager. For the interns and others in training, who normally are addressed at their weekly "didactics" educational seminar by a professional, it was "a thousand times more powerful" to hear from a patient, said Dr. Brad Schwimmer, a psychologist at the hospital.

"It's the first time ever a patient has come and taught us," said Schwimmer, who has been treating Bennett for the past eight months. "And it's the first time I could see my students didn't have their cellphones out."

Bennett, who lives in Westminster with his parents and younger sister, was diagnosed two years ago with metachromatic leukodystrophy, or MLD. It is one of a group of rare genetic disorders in which the growth or development of the myelin sheath that insulates nerve cells is disrupted, affecting the central nervous system. (Another leukodystrophy, adrenoleukodystrophy, or ALD, became more well known after it was featured in the movie, "Lorenzo's Oil.")

It occurs in one in 40,000 to 160,000 people, according to the National Institutes of Health.

Schwimmer brought Bennett in as a way of teaching the staff how to help a terminally ill patient — that it's not all about the impending death but remaining life — and to remember that there may well be a physical problem behind what initially seems like behavioral issues.

For five years, from the time he was 12, doctors thought Bennett had attention-deficit disorder. After he was hospitalized because of hallucinations, they thought it might be schizophrenia.

But a lot of the time, teachers, classmates and even his parents thought he was just being lazy or attention-seeking.

Bennett said he now realizes he couldn't interact normally or answer simple questions because "my neurological network has sent the original message into a million different pieces in my brain."

Bennett tends to brush off questions about how it has felt to deteriorate, lose close friends and face an early death. He refers frequently to his belief in God, and he hopes to spread awareness of his rare disease and prompt more research and possibly a cure.

"I'm hoping that [God] will shed some light on this and maybe cut me some slack," he said wryly. "I am still in denial. I haven't come to my senses yet."

But Bennett is well aware of what he has lost.

"I used to be the popular kid," he said.

As the disease slowly took over his body, Bennett wasn't able to enjoy many of the things he loved — once an avid swimmer, cold now made his muscles seize up, so he wouldn't go in the water when his family went to their beach home.

But there have been moments of respite and levity throughout the ordeal. A couple of weeks ago, the family went to St. Lucia, where the warm waters beckoned. Overcoming his fears, Bennett was able to swim and snorkel amid the colorful fish and coral.

"He was Greg again," said his mother, Pam Bennett.

At a certain point, his father, Wayne Bennett, noted that his underage son was enjoying a game of beer pong with three bikini-clad young women.

"For a minute it was like we were just overcome with a sense of like, 'Oh my God, he's normal for a minute, he's actually in there, he's a part of the action, he's been accepted'" said Wayne Bennett, 60, who is retired from a managerial post at McCormick & Co. but still consults.

"He's 19, and normally I don't care, but I said to him a while ago — and he gives me a hard time about it — 'Greg, don't drink beer, don't drink alcohol. Alcohol kills brain cells and you've got enough dead brain cells. Smoke pot,'" Pam Bennett, 50, said with a laugh.

The Bennetts say they still feel guilty for losing patience with their son before he was diagnosed. They couldn't understand why his schoolwork was suffering or why he no longer seemed to have friends. Pam Bennett remembers how he couldn't seem to read a simple newspaper article for a school presentation.

"I remember yelling at him, 'Greg, you read Harry Potter in third grade,'" she said. "This was my rocket- science, straight-A kid."

Suddenly, though, he was getting a couple of B's, not doing as well on his team and, most noticeably, losing friends — all of which could be attributed to normal changes like having a different baseball coach or making the transition from middle to high school.

Then his motor skills faltered — he had trouble tying his shoes and buttoning his shirts. But Bennett was canny enough to find work-arounds like tucking his laces inside the shoes' tongues or slipping shirts over his head.

Pam Bennett, a nurse, increasingly grew concerned, and lobbied doctors for MRIs and other tests. It took a while, but eventually her son was diagnosed with MLD.

In addition to his medical treatment, Greg Bennett went through multiple therapists before clicking with Schwimmer, who specializes in working with youths who have chronic medical conditions. Schwimmer said he believes in a positive approach, working with Bennett on coping skills and goals he wants to accomplish, and they seem to share a warm, even jocular rapport.

"Greg and I work on..." Schwimmer began to say, before Bennett finished for him: "a slew of things."

Among that slew is his educational campaign — he'd love to appear on Ellen DeGeneres' talk show. While awaiting that invitation, he and his mom have worked up a fundraising project. After deciding they didn't really want to be drenched in ice water a la the bucket challenge for ALS, they developed the slogan, "Get muddy for MLD because it's a dirty disease."

They sell brown beaded bracelets to raise funds, but as it turns out, it's already benefited Bennett. His MLD-induced hand tremors, Bennett said, are eased by stringing beads.

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