Suneel's Light raises research funds for rare disorder
by JESSICA L. FINCH Associate Editor

Ram

When the school day is done for Suneel Ram, and the workday ends for his mom, Dr. Neera Gulati, their challenges are far from over.

That is because Suneel's disorder, Duchenne muscular dystrophy, requires attention all the time, Gulati, a Williamsville resident, said.

Suneel was born with the disorder, of which there are currently 20,000 cases reported in the United States and 100,000 worldwide.

The family has become extremely involved in research and raising funds to treat the disorder, including Ram's father, Dr. Raghu Ram, and his stepmother, Dr. Pavani Ram, of Amherst.

Gulati said they are looking for the best research possible. To help raise funds, Suneel's Light was founded in 2002. In the past two years the organization has gained ground, bringing attention to the disorder.

There is very little research being done in the United States, but England and Australia have had some promising success. Funds raised through Suneel's Light go toward research.

The disorder is mostly found in males; less than one percent of cases are female. A genetic mutation is found in the X chromosome. For females, both X chromosomes would have to be mutated to be affected by the disorder.

The average life expectancy for someone with Duchenne is 20 years.

Gulati said she hopes a break in research is on the horizon to find both a cure and treatments to reverse the effects.

"Research is key, and right now it's cutting edge," she said.

Duchenne is a neuromuscular disorder that causes deterioration of the muscles. Suneel can't walk because he has bone fractures in both legs.

"He has to be carried. And when be brushes his teeth, washes his face, he needs assistance," Gulati said. "He's at an age where he wishes he was more independent."

A student at Maple West Elementary, Suneel is considered intellectually normal. But some children with the disorder suffer from mental and behavioral disabilities.

"He is emotionally and intellectually beyond his years ... he understands what's going on," Gulati said.

It's a daily struggle, from needing an aide in school to also seeing a specialist for physical and occupational therapies.

With debilitating diseases there are fears. Gulati said there is a concern as to whether Suneel will heal and be able to walk again.

But there are joys, too. Suneel enjoys computer games and sports. He has been a fan of the Buffalo Sabres and Bills since he was young. In addition to attending several hockey games. Suneel also takes singing lessons. He can captivate a conversation, as proved when he attended a camp for children with Duchenne.

Suneel's Light raises money for research and not for Suneel.

"There is so much hope. We are seeing therapies and treatments coming to market," Jennifer Haggerty, director of research of Suneel's Light, said.

She said with so many different aspects of the disease and so many ways different people are affected, treatments and drugs are still being developed. She said the main goals are to stop progression and muscle deterioration.

"There is a lot about Duchenne that's isn't understood," she said.

The organization has raised $110,000. Its next fundraiser is scheduled for Nov. 11 at Samuel's Grande Manor, 8750 Main St., Clarence. As the Buffalo Bills prepare to play the Miami Dolphins in Miami, attendees will join for Suneel's Light's Tailgate for a Cure from noon to 4 p.m. Prior to kickoff, a Chinese auction will take place, and at halftime a live auction will take place. The football game will be shown on a big-screen TV. Advance tickets are $35 and at the door, $40. For tables of 10, call for details.

For more information, visit www. suneelslight. org.