By author
Staff Writer

Not every parent can say he or she struggled to plan their child's funeral before he was 10 years old, but Paula Raymond is not your average parent.

"They say kids can change your life," said the New Boston resident. "Boy, they aren't kidding."

Her 10-year-old son, Marcel, suffers from a devastating mitochondrial disorder, and was diagnosed when he was 2.

"I had a feeling that something was the matter from the get-go," said Raymond. "I had this underlying suspicion, this gut feeling, and something inside told me, 'this isn't right.. The doctors thought I was nuts."

Mitochondrial disorders result from failures of the mitochondria, which are specialized compartments in nearly every cell of the body. Mitochondria generate nearly 90 percent of the energy necessary for cell life and growth.

When mitochondria fail on a large enough level, entire systems of the body begin to shut down because they can neither function nor grow. A popular analogy is of a city that is suffering a "brown out:" there is barely enough energy to keep certain services running, and as a result they run at a sub-par level, or not at all.

Currently, there is no cure for the disease, which affects more than one in 4,000 American children before the age of 10.

When Marcel was diagnosed, Raymond experienced a range of emotions.

"It seemed like there was nothing out there for resources, and it made me angry," she said. "I was dumbfounded. I knew that something was the matter, but no one believed me. The diagnosis wasn't necessarily a total shock, but the grief throws you off for a while."

Raymond said that, as time went by, she became more optimistic and comfortable, but cannot look into the future.

She founded the New Boston organization "Marcel's Way" so that other parents of children with mitochondrial disorders can perhaps avoid what she went through.

"I started the organization up in July 2003 as a sort of support group at first," she said.

"The name began to circulate, and pretty soon people began to contact me."

While Raymond is still the only employee, Marcel's Way has a board of directors and serves nearly 45 families in the state.

"We're a support organization," she said. "The financial piece is just the icing on the cake. We have a family fund in place to defray the cost and financial strain on the families of these kids. Otherwise, it's a huge strain, physically, emotionally and financially."

Members of the group may deposit or withdraw cash according to their needs and abilities.

"Let's say you have a single mom who has to drive to Boston or Lebanon to get treatments for her kid. She might need snow tires for her car, things like that, and that's where we come in." In addition to financial matters, Marcel's Way also offers counseling.

"We understand that the disease can wreak havoc on families." said Raymond. "We want to be able to help people financially and emotionally. We offer group counseling and one-onone assistance."

Marcel's Way has many goals. It initially began as a support service for affected individuals and their families, and is now a support network for the state. "People call from all over, and they say, .I wish we had something like this.. It's moved much faster than I thought it would." Raymond said. "I.m really thrilled. We want to expand. We want to increase awareness, money and research. We want to find a cure someday."

Marcel's Way is a nonprofit agency and depends on the taxdeductible contributions of both members and the public. For more information, call Paula Raymond at 487-2770, e-mail marcelsway@msn.com, or visit the Web site at www.marcelsway.org.