Maureen and Meaghan Collins share the same birthday, the same school and many typical traits of teenagers–a love for basketball, apprehension about college, giggles about boys.
What the fraternal twins don’t share, despite their practical inseparability, are the same genes.
Maureen is a 5-foot-6-inch, 125-pound senior starting guard on Regina Dominican’s basketball team, a perpetual blur of motion whose effortless ball-handling skills and sharp outside shot earned her all-conference honors as a junior.
Meaghan is a 5-foot-2-inch, 85-pound carrier of facioscapulohume-
ral, a progressive form of muscular dystrophy first affecting the face, shoulder blades and humerus, confined to life in a wheelchair since the 5th grade.
Ultimately, it is this difference that has helped create the most important quality the Collins twins share–a remarkable friendship.
For it is in the moments when Meaghan’s muscular dystrophy comes into play–when she needs Maureen to carry her to the bedroom they share, for instance–that the unspoken bond gains strength.
This bond extends to include all members of the Collins family–parents Phil and Deirdre, half-brothers Tom and Brian McGurn and younger sister Michele, who each cope with Meaghan’s situation with a deceptive effortlessness.
But only Maureen and Meaghan know what is said and shared between them.
“I depend on her for a lot, and she gives me such encouragement,” Maureen said during a recent Saturday at home in Northbrook. “She’s the one person I know I can tell everything to and she won’t tell anyone. We’re very close and support each other.”
Behind closed doors
Seven small wooden snowmen greet visitors to the Collins home, each containing a family member’s name. Inside the ranch house, a full Christmas tree dominates the living room.
The Christmas season is often a special time for any family, but the stakes are raised considerably when life perspective is taught at such a young age.
“It has been a special time for Meaghan because her brothers would come home from college,” Deirdre said. “Much of her social life is her family and friends.”
Tom and Brian McGurn, Deirdre’s sons from a previous marriage, have graduated from college. Only Tom, an account executive for a local radio station, will be home this holiday. Brian is coaching lacrosse outside of London.
But all members of the family, at some point over the years, have contributed to a daily routine that runs like clockwork–Meaghan’s shower at night, her trip to the bathroom in the morning, her trip to school, her trip home.
“She has accepted this with such grace,” said Phil. “She never has said to us, `Why me? Why did I get this?’ “
Hitting home
Doctors diagnosed Meaghan’s condition when she was in 1st grade, and she stopped walking in 5th. The normal age of onset for facioscapulohumeral muscular dystrophy is teens to early adulthood, and progression is typically slow. About 50 percent of those with the disorder retain the ability to walk their entire lives.
With this form of muscular dystrophy, only one parent passes on one defective gene. Offspring have a 50 percent chance of inheriting the defective gene, or what doctors call a spontaneous mutation–a first-time gene defect–can occur. Maureen, who is not a carrier, avoided both scenarios.
Neither father Phil, a commodities trader at the Board of Trade, nor mother Deirdre, a part-time teaching aide at a Northbrook grammar school, have any family history with the disease.
Medically speaking, Meaghan’s situation is called sporadic (as opposed to familial). Bluntly speaking, she has an aggressive form.
“The first two years, it was very difficult,” said Phil. “I remember watching the annual (muscular dystrophy) telethon and seeing their motto, `It could happen to you.’ That really hit home.”
There is no across-the-board prognosis with muscular dystrophy. Some people have normal life expectancies, albeit with progressive muscle deterioration and weakness. With an aggressive form, however, pneumonia is always a scare. Atrophied muscles around the lungs make coughing extremely difficult.
“She hasn’t had (pneumonia) in two years,” said Phil. “Anything like that is very dangerous to anyone with a neuromuscular disease.”
The Muscular Dystrophy Assocation is the world’s largest private-sector supporter of research on neuromuscular diseases and has made numerous breakthroughs in recent years. But it has not identified the defective gene causing facioscapulohumeral muscular dystrophy.
“We’re close,” said Leon Charash, chairman of the MDA medical advisory committee and a pediatric neurologist at Cornell (N.Y.) Medical School. “It’s sad, too, because you see these people, and with the weakness in their facial muscles, they walk around with a perpetual frown. But they’re upbeat kids with courage who want to face the world.”
Making her mark
Count Meaghan among that group.
She is as active in school activities as Maureen is in athletics. She’s president of Youth Council and is a representative of the National Honor Society. Meaghan also carries a 4.4 grade-point average (on a 5.0 scale) and for two seasons has served as scorekeeper at Regina’s basketball games.
“It’s like she doesn’t have muscular dystrophy,” said Deirdre. “In fact, she has just started to say those words. She wants to be so normal. And she is.”
Meaghan is such an inspiration at the all-girls college preparatory in Wilmette that Katie House, a fellow senior, recently used her as the subject for an oral report on role models in a theology class.
“Meaghan is just beloved by her classmates,” said Regina’s principal, Sister Marilee Ewing. “And the relationship between her and Maureen is outstanding. Maureen carries Meaghan into school every day, and they take off on their independent lives.”
Those lives include practically all the same friends, who are equally adept at dealing with Meaghan’s disability. Phil and Deirdre recall many times when friends have picked Meaghan up–literally–put her wheelchair in a car and driven off for a day at Northbrook Court.
“What has helped is her two sisters are so close in age (Michele is a junior at Regina), she has been able to maintain a normal teenage upbringing,” said Phil. “She can’t go on a date with Maureen, but if Maureen goes to a party, she takes Meaghan.”
Mike West, the president of Loyola Academy’s student council, has known the Collins family since grammar school.
“I always see them (Maureen and Meaghan) together at dances,” West said.
The West and Collins families are also part of a large group that vacation together each spring in Florida.
“We go to the beach sometimes at night,” West said, “and Meaghan is right there with us.”
Having to be carried to the beach or to school or to the family room at times can make Meaghan feel indebted. But there are other times–perhaps when Maureen’s outside shot isn’t falling or a tough school assignment has her bogged down–when the roles get reversed.
“Meaghan helps Maureen with her homework,” Deirdre said. “They give each other so much.”
They also, like most siblings, have their share of arguments. Two people who spend as much time together as Maureen and Meaghan do can’t avoid those.
But, as close friend House said: “As much as Meaghan hates to admit it, those two are best friends.”
Looking ahead
Their relationship will experience a major change next fall, when Maureen and Meaghan move on to college.
Maureen has applied to Marquette University and the University of Dayton, while Meaghan already is accepted at University of Wisconsin-Whitewater. The university is a pioneering force in programs and services for students with disabilities.
They may see each other the second Friday of October, returning for when Deirdre and Phil help serve as hosts for the Haight Dinner. The annual benefit dinner-dance has raised more than $450,000 for muscular dystrophy research in its 20-year history.
But save for the phone, Maureen and Meaghan will be separated for the first time.
“Not being together next year will be both good and bad,” said Maureen. “It’ll be good to go away and grow up more, be more independent. But it will be hard that she won’t be right there for me.”
Muscular dystrophy is linked forever with Labor Day and the tireless Jerry Lewis, whose annual telethon has raised millions for research. But the disease doesn’t go away when the show ends.
It still will be in the Collins home on Christmas–and the day after that, and the day after that.
Also present will be a certain grace, a daily reminder of the power of a family’s love and the human spirit.
“As a basketball player, Maureen tries really hard to do her best,” Meaghan said. “She’s a fighter.”
In this family, it’s part of life.
