Saltwater Portrait

Aly Fisher: There’s a lot going on behind Aly’s eyes

Success in the face of lifelong disease
September 3, 2013

Anyone who asks Aly Fisher to tell you about herself isn’t going to quickly find out much about her.

On initially meeting Aly, the first thing one should see is her, a 16-year-old girl; a Cape Henlopen High School sophomore.

But in reality, the first thing you’ll see is her wheelchair, and then Aly. But to find out who Aly is, it’s important to know why there’s a wheelchair.

Born in Changsha, China, Aly arrived in the United States when she was 9 months old. At age 3, she was diagnosed with girdle-limb muscular dystrophy at A.I. duPont Children’s Hospital.

Girdle-limb MD causes weakness and wasting of muscles in the arms and legs.

Aly’s parents, Loretta Higgins and Cecily Fisher, are both healthcare professionals. Higgins, 53, is a Delaware Hospice nurse practitioner.

Fisher, 52, is a registered nurse healthcare consultant. The couple met when both worked at what was then Presbyterian-University of Pennsylvania Medical Center in Philadelphia, Pa. Loretta and Cecily have been together for 25 years and united in civil union ceremony last fall. The family lives in Wolfe Pointe, near Lewes.

Her parents said Aly was born with muscular dystrophy; it just went undetected.

“She’s been in a wheelchair now for six-and-a-half years,” Loretta said.

Progress in MD research to stop or prevent the disease has been very slow, Cecily said. “But what they have learned a lot about is how to keep children with muscular dystrophy healthy longer. One of the things that we’re vigilant is about is Aly’s respiratory health,” she said.

There are several types of MD and many subtypes of girdle-limb muscular dystrophy. The type Aly has is rare.

“She doesn’t make dystrophine, and dystrophine is what you need to make a muscle,” Cecily said.

Although living with the disease is sometimes physically challenging, Aly said at school her classmates and teachers treat her no differently than other student.

She didn’t have a Sweet 16 birthday party, but she, her parents, and her 10-year-old sister Emily went on a cruise.

Last winter, the family boarded a Norwegian Cruise Line ship in New York City and sailed south, stopping in Florida then in Nassau, the Bahamas and Great Stirrup Cay, a private island.

In school, Aly’s worked on the yearbook and she’s interested in journalism and art, but she hasn’t charted a definite career path.

She received a Jefferson Award last year for Outstanding Leadership in Volunteerism. Cecily said Aly didn’t know she had been nominated for the award.

“I raised money for muscular dystrophy a couple different ways. I made up a poster and put it on jars and containers and asked family members to put them in businesses and shops.

“I made a Facebook event page and mom’s friend Ileana’s daughter painted a picture and we raffled it off,” Aly said.

Cecily and Aly have also been involved with Muscular Dystrophy Association Muscle Walks.

“The walks raise money for hospitals that do MDA clinics. When Aly raises money for the Philadelphia Muscle Walk, some of that money goes back to A.I duPont and some of it stays in the Philadelphia area and some to southern New Jersey,” Cecily said.

Aly’s efforts helped raised nearly $8,600 last year, and she’s raised ever-increasing amounts every year she’s done it.

“We’ve set a goal of $10,000 for next year,” Cecily said.

An honors student, Aly is good at math and is studying algebra and geometry. She said she does well in science, “but chemistry is kinda hard.”

She enjoys reading, and George Orwell’s "1984" was a recent English class assignment. “ I’m not enjoying it. It’s kinda boring,” she said.

“I kinda like teen romance and I liked the vampire books, but it’s getting kinda old,” she said referring to "Twilight," a series of vampire-themed romance novels,” by Stephenie Meyer.

She said she hasn’t decided where she’d like to go to college. “I kinda want to go into psychology. Asked why psychology, she said "I like to help people."

Aly said she isn’t shy but she’s undoubtedly quiet.

Are you quiet in school, too?

“It depends on what day it is.”

Do you mean day of the week or what’s happening in school?

“No, what mooood I’m in,” she said, stretching the word out for emphasis.

Loretta said Aly has been observant since she was a young child. “She kinda tends to take in what’s going on,” Cecily said. “And then she’ll make her pronouncements,” Loretta quickly added, laughing.

Because of Aly’s observant nature, she’s not going to go on and on about herself.

Asked if there’s anything else readers might like knowing about her, she pauses for about 10 seconds.

“I am Delaware’s Goodwill Ambassador for the Muscular Dystrophy Association, and I’m 2013’s National Goodwill Ambassador for Tall Cedars of Lebanon of North America,” she said. Tall Cedars is only a 10,000 member Masonic-affiliated organization devoted to fostering friendship and fellowship.

Nope. Aly wasn’t even going to mention her ambassador’s role with a group committed to providing “a place in the sun” for thousands of victims of neuromuscular diseases.

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