Weight lifted from teenage caregiver
By WAVENEY ANN MOORE, Times Staff Writer
ST. PETERSBURG -- Michelle Haigh says it without a trace of self pity: At 17, she doesn't know how to be a kid.
At 13, Michelle became her mother's primary nurse. In the years since, she has helped her dress, prepared her meals, administered her medicine and recently, became her eyes.
Her mother, 47-year-old Melanie Haigh, has Charcot-Marie-Tooth disease, a progressive nerve disorder. Its symptoms include muscle weakness and wasting in the body's extremities, the lower legs and forearms. It has no cure and is hereditary. Michelle has begun to show its symptoms.
"Oh, yeah," she answered when asked whether she is scared of how the disease could affect her. "I don't want to be like 40 years old and not be able to do anything."
But with this weighing on her mind, Michelle has continued with her studies at Lakewood High School, where she is a senior, and taken care of her mother, helped by Michelle's grandmother.
When Michelle's mother became too weak to drive to work, the grandmother -- 78-year-old Fran Kennedy -- chauffeured her so she could continue in the job she loved. When Melanie Haigh could no longer work, Mrs. Kennedy took over the nursing while Michelle attended school.
That's changed. Mrs. Kennedy got cancer, and the mother grew weaker. Michelle's mother and grandmother now share a room in the Shore Acres Nursing Home.
"Her daughter and I did everything for her, so when I came into the hospital, there was no one to do anything for her," Mrs. Kennedy, a former librarian and teacher with Pinellas County schools, said of the arrangement.
Michelle has moved in with an uncle and his family.
Thursday morning, in their small nursing home room with pink privacy curtains, Michelle's mother and grandmother spoke about their situation.
"It's pretty permanent," said Mrs. Kennedy.
"We just go day by day and hope for the best. We're not giving up. The prognosis for my condition is not really great, but I don't give up hope."
Asked what bolsters them, Ms. Haigh, the mother, answered immediately, "Faith."
"And our love for each other," her mother added.
Sitting in a wheelchair close to her mother's bed, Ms. Haigh said being together is a comfort. Randal Kennedy, Ms. Haigh's brother, said it also has meant peace of mind for their mother.
"It's hard for her to let go of the role of caregiver," Ms. Haigh said, smiling.
For Michelle, her mother's stay in the nursing home has brought bittersweet ease.
"It's better for her to be there. Just for the time period she has been there, she's been able to do so much," said Michelle, crediting the physical therapy her mother now receives.
The teenager said her mother was able to use a walker last week.
"I was majorly proud of her," she said.
Ms. Haigh, whose advice to her daughter is to "just go ahead with your life the way you usually do," hopes Michelle will not suffer as she has.
"Hers is a different strain of the disease and I don't think it's as debilitating as mine," she said.
"She does have some symptoms," said Mrs. Kennedy, the grandmother. "But she manages beautifully. Hopefully, hers is not going to progress as bad as her mother's. ... She's one phenomenal girl."
Although she has signs of the disease, Michelle hopes to avoid the diabetes and heart disease that also have affected her mom.
Randal Kennedy -- the uncle -- speaks proudly of his mother, sister and niece. His sister, he said, continued working as a paraprofessional at Skyview Elementary School in Pinellas Park, despite a heart attack and being on dialysis.
"That makes her efforts even more incredible," he said.
Last week, Ms. Haigh talked of going back to her Pinellas Point condominium.
"I'm getting physical therapy each day and my legs are getting stronger and I'm planning to move back to my home," she said.
"If that's a possibility," her mother added gently.
But Ms. Haigh seems to make a point of thinking positively. Two years ago Neighborhood Times told her story after her car, with lightweight wheelchair, braces, and a walking stick made by her brother, had been stolen. At the time, she explained her attitude by saying, "Our motto is, we'd rather laugh than cry.'
"If we didn't laugh," finished her daughter, "we'd cry."
Two years later, they remain upbeat.
"It's life and you can't do anything about it," Michelle said.
Michelle now lives with Randal Kennedy, his wife, Denise, and son, Courtney, in the Tyrone area.
"She's been doing so well with us," Kennedy said.
"I think she's relaxed into our routine. I think she's actually enjoying not having to organize the day."
"It's taking me a lot of getting used to," she said of her new role, "not having to do everything and be responsible for everything and running everything."
"Be a kid," her uncle said.
"I don't know how," she replied.
About the disease
Charcot-Marie-Tooth disease, a progressive nerve disorder, is fairly rare. The disease affects about 115,000 people in the United States, said Dan Stimson, senior science writer for the Muscular Dystrophy Association.
Symptoms include muscle weakness and wasting in the body's extremities, in the lower legs and forearms. Unusual clumsiness, trips, falls and fatigue could be early symptoms of the disease, Stimson said.
CMT, as it is known, is hereditary. There is no cure. Generally, the disease does not limit life expectancy. Patients typically use walkers or other aids to get around. CMT progresses slowly but, says Stimson, many people with CMT remain fairly active throughout life, even though they might need to use a wheelchair.
For information about Charcot-Marie-Tooth disease, call 1-800-572-1717 or go to the MDA's Web site, www.mdausa.org.
© 2006 • All Rights Reserved • Tampa Bay Times
490 First Avenue South St. Petersburg, FL 33701 727-893-8111
From the Times
South Pinellas desks