Duchenne muscular dystrophy is cruel.

The neuromuscular disorder robs boys of energy and their ability to sleep through the night. It prevents them from getting dressed by themselves and doing many other activities kids their age take for granted.

Cruelest of all, it takes their lives by the time they reach their early 20s, usually from respiratory or heart failure.

Medications help hold back the progressive and often aggressive advance of the disease, but it comes with a price, stunting growth due to the use of synthetic steroids and other side effects.

That’s the reality for Suneel Ram, 14, an eighth-grader at Heim Middle School in Amherst. His slightly under-4-foot frame has remained the same the past four years, while his weight of 62 pounds is just 10 pounds more.

“All he really wants to do is to play video games or to hang out with his friends, stay up late or eat whatever he wants, like any other kid. He wants to be like everybody else, because he is like everybody else,” said Dr. Neera Manning, Suneel’s mom.

The fatal disease is one of nine muscular dystrophies and the most common in children, with 20,000 affected in the United States and more than 100,000 worldwide. The defective gene responsible for the disease, which almost exclusively affects boys, was discovered a quarter- century ago.

Suneel, a Sabres and Bills fan who likes science and social studies, has a beautiful smile and maintains a trickster’s sense of humor. As much as he strains to be independent, though, his daily routine revolves around physical and occupational therapists, masseuses and tutors.

There’s even a note-taker at school for Suneel, an excellent student who can no longer write for a sustained period.

Then there are the medicines he needs — two heart medications, the bone-strengthening medication he gets in a shot every other day, several supplements and melatonin to help ease his muscles so he can sleep through the night.

Manning, an Amherst family practitioner, has traveled to several states and as far away as the Netherlands to make contact with Duchenne researchers. In 2002, she established Suneel’s Light, a nonprofit foundation, to raise funds for genetic research leading to a cure.

In 2008, the foundation presented $80,000 to an Australian genetic researcher to help him in his pursuit of a cure for the lethal childhood disease.

Thursday, from 5:30 to 9 p. m., Suneel’s Light will be host for the charity gala “A Night to Shine” in the Hauptman Woodward Medical Research Institute, 700 Ellicott St., with all proceeds benefiting the foundation.

Buffalo Sabre Paul Gaustad, former Sabres stars Rene Robert and Danny Gare, and local celebrities will be on hand. There also will be silent and live auctions, a bar and a special menu prepared by chef J. J. Richert of Torches Restaurant in Kenmore. Tickets are $75, $125 for a couple. For more information or to make a donation, call 777-2324 or go to www.suneelslight.org.

Manning is hopeful for progress toward a cure because of the more than 80 clinical trials now occurring around the world and two that are about to begin by companies for the type of Duchenne dystrophy that Suneel and many boys like him have.

“I feel very encouraged. I think there is definite hope that we will have very good treatments in time for our boys. We really are committed to helping all of the boys,” Manning said.

Last month, Suneel performed in Kleinhans Music Hall with the Buffalo Niagara Youth Chorus Chamber Choir, an exciting and special moment for him and his family after he labored through the rehearsals.

“He appreciates being a part of things,” his mother said. “That really makes a big difference. I think for anybody with a disease, to know you are wanted and that you are cared about and can still contribute to society and contribute to your friends is so important.”

msommer@buffnews.comnull