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Fourth-grader's family, friends take up fight against her genetic disorder

Fourth-grader's family, friends take up fight against her genetic disorder
Wearing their "Hope for To-Morrow" shirts heralding an Oct. 11 fundraising event to raise money to fund research for Friedreich's Ataxia Research Alliance, Sydney McCloskey and Anna Morrow, both of Anneslie, pose for a picture. Anna, 9, has been diagnosed with Friedreich's Ataxia. (Brian Krista / Baltimore Sun Media Group)

Anna Morrow is an athletic fourth-grader at Stoneleigh Elementary School, where she plays field hockey and lacrosse. The 9-year-old also likes to ride her bike; and her parents signed her up for horseback riding lessons at the Graham Equestrian Center after reading a recent story about it in the Towson Times.

"She's always been an active kid," said her mother, Kristin Morrow.

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Anna is also wild for the Baltimore Ravens and wants to be a football player, coach or announcer when she grows up. A teacher at school, who's a New England Patriots fan, had teased her with a knock-knock joke about the winless Ravens before they beat the Pittsburgh Steelers.

Knock Knock.

Who's there?

Owen.

Owen who?

O and 3.

The Ravens' first win of the season came well past Anna's bedtime, but her father, Ben Morrow, made sure to come into her room, kiss her good night and tell her the Ravens had won.

"She smiled," he said.

And the next day at school, she told her teacher, "You can't use that joke any more."

But a rare genetic disorder, Friedreich's Ataxia, is slowly stripping the Anneslie girl of her athleticism and could shorten her life, according to her doctor.

Friedreich's Ataxia is a progressive, degenerative neuromuscular disorder, caused by a gene mutation that limits the energy production of nerve cells, said Dr. David Lynch, a neurosurgeon at the Children's Hospital of Philadelphia, who is treating Anna. The children's hospital has a dedicated program specializing in Friederich's Ataxia.

Lynch said the disease affects cells in selective parts of the nervous system, including the near the spinal cord and in the brain's cerebellum, which regulates muscular activity. The disease mostly impacts coordination and gait, but not cognitive function.

Five thousand people in the United States have Friedreich's Ataxia, Lynch said, adding that Children's Hospital of Philadephia, known as CHOP, is currently following about 300 patients with the disease.

Some people with Friedreich's Ataxia, including Anna, also are diagnosed with scoliosis, curvature of the spine, Lynch said. Friedreich's Ataxia can also lead to heart disease, which is the cause of death in 50 to 60 percent of patients, he said.

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And, on average, people with the disease die in their 30s, although seven or eight promising drugs are now in clinical trials and Anna may be eligible as a participant, Lynch said.

Kristin Morrow said she and her husband, who are participating this weekend in a bike ride, called rideATAXIA, to raise money for research, have told Anna that she has the disease. They have also had her fitted with a back brace that she must wear 20 hours a day to combat scoliosis.

"She can't even balance on one foot without falling over," Kristin Morrow said. "And she knows it could get worse. She knows she needs to wear her back brace," or she could face spinal fusion in the years to come. "We've never used the word 'wheelchair,' but we've talked about having to put railings in the house and skid pads on the steps."

Also, during trips to doctors, Anna has seen other patients using walkers, her mother said. She said she and her husband are not worried about Anna possibly reading this story.

"Ben and I had this discussion before we talked to you," she told a reporter.

She also said, "Anna hasn't asked a lot of questions."

Anna's pediatrician became concerned earlier this year when "her reflexes were absent" during a checkup, her mother said. The doctor tapped her on one knee and she didn't respond. Genetic testing came back positive for the disorder in June, and Anna now is being treated by a neurologist at Johns Hopkins University, as well as Lynch in Philadelphia. Anna is also taking a lot of vitamins and receiving alternative chiropractic treatments as recommended by a doctor in Louisiana, her parents said.

There's no medication or cure for Friedreich's Ataxia, which affects one in 50,000 people, but Ben Morrow, an environmental monitor for the civil engineering firm McCormick Taylor, and Kristin said as far as rare diseases go, there's a lot of attention being paid and money raised for research.

Now, the Morrows, with the help of their close friends and neighbors, Jessica and Colin McCloskey, are adding even more money to the research pot. Both husbands and Kristin Morrow are participating in the rideATAXIA fundraising bike ride in the Philadelphia area on Oct. 11. The ride is sponsored by the Friedreich's Ataxia Research Alliance. Participants can ride distances of 5 to 50 miles. Kristin Morrow said her brother and sister also are riding.

Colin McCloskey has also taken it upon himself to do publicity and fundraising for Anna's riding team, called Hope For Tomorrow (a play on Anna's last name), which has raised more than $22,000 in pledges from friends and family members.

Kristin Morrow said the ride has raised $120,000 in all so far, and that Hope For Tomorow is at or the near the top in team donations. The team has made T-shirts that say "Hope for Tomorrow."

The Morrows and the McCloskeys are longtime friends, each with four young children. They met at Brown Memorial Weekday School, an independent preschool based at Brown Memorial-Woodbrook Presbyterian Church. Both women are stay-at-home moms. Their oldest daughters, Anna Morrow and Sydney McCloskey, are best friends. Both families live two blocks apart — the McCloskeys on Anneslie Road and the Morrows on Murdock Road.

The Morrows have no family history of Friedreich's Ataxia, but are both carriers. Their other three children are also at risk.

"We haven't gotten the others tested," Kristin Morrow said. "If we start seeing symptoms, we would."

The McCloskeys feel for the Morrows.

"It's heartbreaking," Jessica McCloskey said. "I look at Sydney and think it could be her. We love Anna. The girls have been friends since kindergarten."

"I've never done fundraising for anybody in my life," said Colin McCloskey. "It's just having a chance to help — or try to help."

The Morrows are overwhelmed by the support of many friends and neighbors, and said people have done everything from bringing them food and beer to offering to mow their lawn. The preschool at Brown Memorial is planning a fundraiser, while students at Stoneleigh Elementary are saying, 'Tell Anna I hope her back feels better.'"

But there is no local or regional support group for families impacted by Friedreich's Ataxia, although Kristin Morrow is a member of a Yahoo Groups online site. And there's little the family can do except wait. For now, they're only supposed to meet a few times a year with their doctors. Lynch said he is seeing Anna once every six months.

Meanwhile, the family is doing its part to publicize Friedreich's Ataxia.

"It's really just about trying to raise awareness and money," Ben Morrow said.

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Lynch said that for now, the best thing Anna can do is "go to school, enjoy life and let us go to work to find a cure."

For more information about the ride, Friedreich's Ataxia and Anna Morrow, go to http://kristincmorrow.wix.com/hopefortomorrow.

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