Paula Raymond knew right away that something was not right with her newborn son, Marcel. But it took nine months for their physician to realize he was not meeting the typical baby milestones and another two years, during which Marcel nearly died, before he was diagnosed with a mitochondrial disorder.

Raymond, who had never heard of the disorder, was told her son had a progressive illness for which there was no cure. When she tried to find information and help, there was no place to turn to.

The next few years were very difficult. Because of nursing shortages, Raymond was unable to get the in-home care Marcel needed and it was impossible for her to work full-time. She had to sell her house, nearly had to go on welfare and her marriage fell apart.

"My marriage was a casualty of this disorder," she says, "like that of many families in this situation."

About four years ago, Raymond was sitting at her kitchen table in despair. She decided she couldn't be the only one out there with this problem and called seven people whose names she got from the New England chapter of the United Mitochondrial Disease Foundation. Three showed up at the first meeting in her home in October of 2000. Today, about 40 families are involved in two support groups and a third group is forming in northern New Hampshire. Raymond has gotten inquiries from throughout the U.S. As far as she knows, there is no other organization like Marcel's Way in the country. Locally, the organization holds monthly meetings for families, sponsors events to raise awareness and funds, and directs families to the resources they need.

When Marcel was five, Raymond made the difficult decision to place him in Cedarcrest, a non-profit facility in Keene that cares for children with multiple disabilities.

Today, the nine-year-old is profoundly mentally retarded and epileptic. He cannot talk or walk and is incontinent. He must be fed through a tube that goes directly into his stomach.

Raymond now works part-time at Crotched Mountain, a rehabilitation center in Greenfield, and is pursuing a degree in human services and business management at Keene State College.

Mostly children are diagnosed with the 60 or 70 different types of mitochondrial disorders. Mitochondria, which are present in nearly every cell in the body; convert nutrients into energy. When they fail, the cells and eventually the organs are injured and sometimes die. The parts of the body most affected include the brain, heart, liver, skeletal muscles, kidneys and the endocrine and respiratory systems. Some children, like Marcel, may be affected mentally while others may be fine cognitively, but have a weak heart or failing kidneys. There is no known cure although mega-doses of vitamins seem to help.

Doctors have no idea how long those with the disorder will live, Raymond explains. "They could live a full life span and slowly lose their abilities such as eyesight or hearing or mental or physical abilities, or they could decompensate rapidly, within a day.

"It is scary as I have no idea whatsoever how long Marcel will live," she says. "I plan for one year into the future. That's all. Marcel is doing well right now and I feel safe in thinking I'll have him with me for one more year. I cannot allow myself to think beyond that. I don't want to fool myself. I need to be prepared, at all times, for the worst."

Between Marcel's Way and her work and schooling, Raymond finds herself a very busy person. She gives numerous talks and corresponds with individuals and organizations around the country. She continues to visit Marcel several times a week and takes him home on weekends.

"I try to think what we would be doing if he were a typical nine-year-old," she says. "So we go to the movies or I push his wheelchair through the woods and he touches the plants. We go the lake and he sits between my legs in the water; Marcel loves the water."

And, though it keeps her busy, Raymond is very grateful for the organization she founded. "It is really all self-serving," she says. "I needed to meet others who were going through the same thing I was. It gives you a connection. We know each others' stories and we can talk about things with one another that we can't with anyone else. We have our own little community.

"Marcel may not be here long and he is non-verbal," she adds softly, "but I feel he was sent here with a purpose – to teach people, especially his mother – to help us find the way."

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