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 With Help of Local School Staffers, Student Able to Deal with Rare Disorder

February 6, 2008 - It’s not easy being green. Just ask 11-year-old Brooke Dunaway, a fifth grader at Knightstown Intermediate School.

She’s not really green, of course. But her height and weight, along with a few other physical characteristics, sometimes makes her feel like a girl of a different color. Brooke has a relatively rare disorder known as a Marfan Sydrome, a congenital disease effecting connective tissues in her body, which doesn’t produce normal levels of collagen, a substance crucial to connective tissue development.

In a nutshell, Marfan sydrome results in abnormal growth brought on by her body’s inhibited connective tissue (tendons and ligaments). Her body’s growth is unchecked by normally stiff connective tissue. What results are long, thin bones and unusually She’s a full head and shoulders tall then her fifth grade classmates. She also has large feet with long toes and very long fingers on big hands. And she’s really thin.

At 5’ 9” tall and 75 pounds, Dunaway is definitely tall, not unusual these days. Even her weight doesn’t seem that incredible. There are plenty of tall, thin girls around. On the other hand, there aren’t many pre-teen girls that tall. She towers over her fifth grade classmates, leading many of them and other students to gawk. The disease is relatively obscure. It’s not a high-profile ailment like multiple sclerosis or cancer. But, for Dunaway, the disorder has resulted in unwanted attention. Her unusual size means she’s the subject of seemingly endless stares – not only among her classmates, but the general public as well. Although innocent, that kind of youthful curiosity has to be tough for a smiling, gregarious 11-year-old, who wants to be an actress, a singer, a veterinarian and maybe a nurse when she grows up.

There’s no doubt about it: this disease is difficult. There may be worse diseases. But Marfan syndrome, a lifelong condition, not only results in an unusual appearance for its sufferers, it can also lead to a potentially fatal heart condition. She suffers arthritis-like pain in many of her joints. And her fragile eyesight (the syndrome adversely effects her eyes’ connective tissue) prevents her from participating in a variety of sports and other activities.

While the diagnosis may be new to Brooke, the condition certainly isn’t. She was taller than an average seven-year-old when she was only three. Not only that, she could also palm a basketball at three – evidence of her amazing and rapid growth. “We knew something was wrong,” said Dunaway. “We just never knew what it was. The doctors didn’t know either.”

But Brooke seems to take her condition in stride. What really bothers her, she said, are the stares and whispers, the sideways glances and humiliating giggles.

“Brooke has developed emotional issues because of the staring and gawking,” her mother, Kathryn, said. “This one kid at school - an ignorant sixth grader - calls me Godzilla,” Brooke said, wrinkling up her nose. “And (classmates) are always talking about how I’m taller than their mom and dad. Every time someone asks me about my Marfan syndrome, I explode on the inside, but I stay calm on the outside. I just answer them and go on.”

The hurtful stares and name calling hasn’t stopped Brooke from having a slew of friends. Brooke said, “I asked my girlfriend, ‘how can you be my friend, since I have this disorder?’ she said, ‘I just like you because you’re funny.’”

According to her mother, Brooke’s main problem wasn’t the stares or the whispering. It was simply not knowing what was wrong with her. She said doctors at Children’s Hospital in Cincinnati weren’t sure what the problem was until just a few months ago.

Things got better after the diagnosis, particularly at Knightstown Intermediate School. According to Dunaway, the staff, including Principal Don Scheumann, Assistant Principal Chris Bundy and others, leapt into action, researching Brooke’s condition and brainstorming ways to better serve her needs. Within a week of a staff meeting called by Scheumann, Dunaway saw a positive change in her daughter. “She came home after all this and gave me a hug,” she said. “That wouldn’t have happened before because she was so stressed out. The school’s done a great job.”

Dunaway said Brooke attended a few other area schools, but couldn’t find the needed help. The experience with KIS, she said, has been a welcome relief. “It’s the greatest feeling to know that I have help here. They’re really working with me and to have them do it so quickly and show their concern … it’s very nice.

“I’ve been so impressed with the school because they jumped right on it,” Dunaway said. “It was great to know that I have this backing. From the principal to the school nurse, they really helped me a lot.”

The help Scheumann and company administered came in the form of an ongoing Marfan Syndrome awareness campaign for students and faculty members. Dunaway said the school presented special Marfan Syndrome awareness convocations for Brooke’s classmates. “I think if her classmates know about Brooke’s condition, it’ll kind of take away the curiosity about it.

When Brooke couldn’t fit into a regular fifth grade desk, KIS staffers thought outside the box and came up with a plan to help normalize their student’s condition. Instead of giving her a special, larger desk, they gave each student in the class a larger desk.

Things like that, along with the awareness campaign, are what strike a chord with Dunaway. “That shows that they really do care about Brooke.”

According to Dunaway, the KIS staff took quick, decisive steps to help alleviate and prevent Brooke’s emotional stress. But, they’ve also had to accommodate her educational needs. Brooke’s hands are quite long, her fingers easily wrapping completely around a soda can. Unusually flexible fingers (she can bend all her fingers back, touching her wrist) and weak hand muscles prevent her from holding a pencil or pen properly. So teachers and administrators are working to find lessons she can complete on a computer. Dunaway said physical education teachers are finding alternate gym activities that allow Brooke to participate without the threat of serious injury.

Brooke isn’t any different than any other kid her age. She scowls at the thought of homework, wants to stay up past her bedtime and actually likes going to the doctor because “it gets me out of school!”. Knightstown residents who go to jv and varsity Panther basketball games have probably seen her. She runs around and laughs with the other kids. She’s just a little taller, and tends to hike up her jeans because of her skinny frame. When asked how upsetting Marfan Syndrome has been for her, she bites a fingernail and thinks. “The staring bothers me,” she said. “But the only time I ever cried about it was when I was trying to find clothes that fit. That is soooo frustrating!”

Brooke’s openness about her disease is part of her larger plan to bring awareness to the community. She wants people to know about Marfan syndrome in the hope that they’ll learn, understand and go on – without staring or asking a lot of questions. “If they know more about,” she said, “maybe they’ll stop staring at me and questioning me.”

 

► Marfan syndrome is caused by a defect (mutation) in the gene that determines the structure of fibrillin, a protein that is an important part of connective tissue.

► A person with the Marfan syndrome is born with the disorder, even though characteristics may not emerge and a diagnosis may not be made until later in life.

► With early diagnosis and appropriate management, the life expectancy for someone with the Marfan syndrome is similar to that of the average person.

► Each child of a person who has the Marfan syndrome has a 50 percent chance of inheriting the disorder.

► Treatment with the heart drug perindopril, along with a beta blocker, may help reduce certain cardiac complications of the hereditary disorder.

► Marfan syndrome, which principally affects connective tissues, is often characterized by excessive bone elongation and joint flexibility, and eye and cardiovascular system abnormalities.

► Progressive dilation and rupture of a major blood vessel, the aorta, are the most serious complications and the most common cause of premature death in people with the disorder.

► Two unaffected parents have only a 1 in 10,000 chance of having a child with the Marfan syndrome. Approximately 25 percent of cases are due to a spontaneous mutation at the time of conception.

► Early diagnosis and advances in medical technology have enhanced the quality of life for people with the Marfan syndrome and lengthened their lifespan.

Data courtesy of the National Marfan Syndrome Foundation. For more information, visit www.marfan.org.

 

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