|12-16-2002, 04:42 AM||#1|
Counting their blessings (ms)
Counting their blessings
Plainfield family facing dystrophy realities
By Jeanne Millsap
SPECIAL TO THE HERALD NEWS
Like most parents of grown children, Clarence and Jean Nash of Plainfield were delighted to have their family home together this Thanksgiving.
Their oldest son, Clarence, 22, and their daughter, Courtney, 19, drove home from Northern Illinois University. They were reunited with their parents and brother, Matthew, 21, who attends Joliet Junior College.
This holiday of thanks might have even meant more to the Nashes than it did to most families. Clarence and Jean value every day they are able to spend with their boys - they know there might not be too many left.
Both of the Nash's sons have Duchenne muscular dystrophy, an inherited genetic defect characterized by the gradual wasting away of all muscles in the body, including eventually, the lung muscles and the heart.
The defective gene can't produce the protein, dystrophin, necessary for the stability of muscle cell membranes.
The disease is always fatal and there is no treatment. Life spans for its sufferers aren't much beyond the mid-20s.
"This is a real burden to carry in life," said pediatric neurologist Thomas Sullivan, who treats Clarence and Matthew at the MDA Clinic at Hinsdale Hospital.
"When it affects a family with one child, it's totally devastating," he said. "There is a large frustration level because they feel so helpless, and we can't help them. You can imagine how devastating it would be to have two children affected in the same family."
Ahead of the curve
But Clarence and Matthew are fighters. The boys have been ahead of the curve all of their lives. They didn't even need wheelchairs until recently. Many Duchenne muscular dystrophy children need help walking by late grade school or junior high.
"They amaze me every day and we are so proud of them," Jean said. "They have so much determination, strength, and courage. They just fight so hard. Nothing really gets them down, and they never complain. They never have."
Father Clarence said his sons have always been ready to tackle anything.
"It's the way they look at themselves," he said. "They don't look at themselves as being handicapped. They see something they want to do, and they do it."
Their father remembers many family vacations and summer camps when the boys went right along with outdoor activities the other kids and family members were doing. If they encountered obstacles, such as on hiking trails, the brothers wouldn't give up or turn back. They just worked to get around the obstacles.
A wish for family
Clarence and Jean wanted to start their family as soon as possibly after they married in 1979. Their wish came true. Within five years, they were a family of five, with three young children.
Jean loved being a mom. She enjoyed staying at home, raising her children. And, although it was a lot of work, she remembers having a lot of fun during those years with her "babies."
The Nash kids were your "usual mischievous kids," Jean said. Clarence, the oldest, was the leader of the pack.
"He would climb out of anything we put him into - his crib, whatever," she said. "He always had to be in control. He was my Mr. Independent."
"Matthew was my lovey kid," Jean said. "He would always curl up with me and would jump in bed with Mom early in the morning. They were typical boys. They loved being outdoors, playing in the sandbox or with the puppy or climbing in the woodpile."
Their youngest child, Courtney, followed right in her brothers' active footsteps.
And, in spite of occasional childhood mishaps, the Nash children had normal healthy preschool years. They walked, talked, and achieved all the childhood milestones right on time.
When Clarence was 5, Jean noticed that he wasn't as fast as the other boys on his soccer team, but she wasn't worried.
"We thought, 'Oh, he's just not the athlete,'" she said. "They were normal, rough and tumble kids otherwise."
It was Clarence's kindergarten teacher who first noticed different about the boy. He was having trouble staying on task in school. The teacher told his mother there was a possibility he might be having petit mal seizures.
"He would just kind of zone-out," Jean remembers.
A battery of tests ruled out seizures, but revealed a concentration of liver enzymes way off the charts. The doctor told Jean the levels were so high, they looked like the results from an adult alcoholic.
Tests for hepatitis turned up negative, and the doctor told Clarence's parents he probably had non-A, non-B hepatitis and to go home and wait it out for six months.
The diagnosis didn't sit well with the Nashes, who sought second and third opinions. They ended up at Children's Memorial Hospital in Chicago.
"Without even taking any more tests there," Jean remembers, "the doctor told us right away, 'I'm almost positive this child has muscular dystrophy.'"
A CPK test and a muscle biopsy confirmed the devastating diagnosis. Clarence had Duchenne muscular dystrophy.
The whole family had blood tests. Matthew had the disease, too. Courtney was a carrier. Their mother, Jean, was a carrier.
"I was just stunned," their father said. "Going on day to day was all I could do."
Jean was equally astounded. Although it's an inherited condition, no one in her family had ever had muscular dystrophy. Not even her three brothers.
Their physician was blunt with the prognosis.
"You're looking at a teen-ager who won't be here," Jean said she was told. "You may be planning a funeral for a 13-year-old."
Jean's outlook on her sons' futures was turned around, however, when the physician also told them, "Your children are going to touch the world in a way no one else can."
She remembers saying to herself, "'Well, this isn't going to get me. I'm only going to cry for one day.' I said from that day on, my boys are going to live normal lives to the best of my ability."
And she, along with her husband, kept that vow throughout Clarence and Matthew's school years.
The boys remained active in the outdoors, worked with an athletic trainer, and participated in the boy scouts until they were 18 years old.
"They had good friends, too, that fit them in," Jean said. "You'll always have the mean kids who would trip them in the hall, but there would always be 10 kids right there to pick up their books."
"I didn't really feel like (growing up) was hard," Clarence said. "It didn't really affect me for the most part."
Laughing, he said the only obstacles he's trying hard to overcome right now are his classes, among which are such challengers as thermal dynamics and mechanism design.
Clarence is now in his senior year at Northern, majoring in mechanical engineering. He wants to work on aircraft design when he graduates. He remains 100 percent independent of other people, he says, living on campus in a dorm and getting around in a motorized wheelchair.
He admits to spending most of his spare time is spent studying, but also likes to play video games.
Matthew is finishing up his electronic engineering technology coursework at JJC. He expects to graduate in the spring.
"I like to build computers and test them," he says. The tech-smart student built the computer he works on now.
One of Matthew's favorite things to do is drive his truck, which he is still able to do, but not alone anymore. He recently had to acquiesce to allowing his mother to accompany him on the drive to school to help him in and out of his wheelchair.
Matthew doesn't have the need for a motorized wheelchair right now. A mechanical one gets him around just fine.
In his spare time, he likes to watch car racing on The Speed Channel and play computer games - "anything I can get my hands on."
"What these boys have accomplished thus far is a major accomplishment for both of them," said Karen Weber, health care services coordinator for the Joliet district of the Muscular Dystrophy Association. "It's been a great pleasure getting to know them."
The organization will be having its annual Jingle Bail Lock-up for MDA this month to raise funds to fight the disease. One hundred prominent citizens will be "arrested" and held until they raise "bail," which will be donated to the MDA.
"All money raised locally stays local," Weber said. "The money raised will go to health care services, muscular dystrophy summer camp, support groups, and wheelchairs and leg braces for patients, among other things."
DECEMBER 16, 2002
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