Fitch senior eyes computer science to help others with physical disabilities

Marley Robinson, 17, of Mystic, a senior at Fitch High School, works with photography instructor Christina Scala, left, of Mystic as they hang her photographs in the hallway for the Arts Cafe art show at the school on Thursday, May 24, 2018. Robinson has spinal muscular atrophy and has spent her entire life in a wheelchair. (Tim Martin/The Day)
Marley Robinson, 17, of Mystic, a senior at Fitch High School, works with photography instructor Christina Scala, left, of Mystic as they hang her photographs in the hallway for the Arts Cafe art show at the school on Thursday, May 24, 2018. Robinson has spinal muscular atrophy and has spent her entire life in a wheelchair. (Tim Martin/The Day)

Groton — Marley Robinson was on vacation around Christmas 2016 in Australia – her mother's homeland, and a place for which Robinson proudly bears a few small tattoos – when she heard some good news.

The U.S. Food and Drug Administration had approved Spinraza, the first-ever drug approved for treating spinal muscular atrophy, the condition Robinson has that keeps her from walking and from being able to sit upright without a strap.

She has been using the medication for about a year now.

"My breathing has improved a good amount since then, and I've gained a good amount of mobility in my arms," said Robinson, a senior soon to graduate from Robert E. Fitch High School.

While she doesn't know what Spinraza may or may not do for her disease in the months and years ahead, Robinson is feeling confident about other aspects of her future.

In the fall, she is headed to Northeastern University, a decision she made in part for its experiential learning co-op program and in part because of its high marks for disability services.

Robinson intends to study computer science and wants to build programs to help other people with physical disabilities. One thing she would like to see in the future is robotic arms that are less cost-prohibitive.

Outside of issues that computer programming could help fix, her five or so flights to Australia have shown her a place that is often unfriendly to people with physical disabilities: airplanes.

Her wheelchair is stored underneath the plane during flights, but she wonders why planes can't just remove a seat and leave space for a wheelchair to be tethered in.

"Marley's spirit, you can't even define it"

As a Birth to Three teacher, Sharon Hollay has known Robinson since infancy.

"She was just the smartest little girl," Hollay said, noting that by her second birthday, she could use a child-sized wheelchair to "maneuver in and out of the bathroom, and around corners and go anywhere she wanted, and this gave her such freedom."

Even after Robinson finished the program, Hollay continued visiting once a week, and the Robinsons attended her daughter's wedding.

"Marley's spirit, you can't even define it," Hollay said. "It's just an indomitable spirit, that she can do it and she will try and she will find a way."

Robinson has had seven or eight back surgeries total, the most recent one when she was in fifth grade. She was supposed to have an intensive surgery when she finished growing, to fuse her spine to the rods in her back, but fortunately the rods fused on their own.

Robinson's mother works at the Mystic Museum of Art, which has given the 17-year-old artistic inclinations.

At Fitch, she is the editor-in-chief of Amphora, the school's art and literary magazine. She is also co-president of the photo club.

Robinson struggles to use a real camera because of its weight, so she does a lot of iPhone photography.

Her inspiration is Christina Scala, a family friend who has known Robinson since she was born — and the photography teacher at Fitch.

"She watches and she picks things up very quickly, and then she adds her own twist to it," Scala said. "Ever since she was a young child, she was able to create, to think and to participate in a very unique, mature way."

Robinson has been involved in a managerial role with Unified Sports, a Special Olympics program that brings together people with and without intellectual disabilities. She also helped with Falcon Academy, an after-school tutoring program.

The senior has taken seven Advanced Placement courses, and has won school awards for French, math, art and science.

Outside of school, Robinson is Connecticut ambassador for the Muscular Dystrophy Association.

To promote the MDA Shamrocks fundraiser, she talked to people at Henny Penny – and was proud that the store in her native Mystic raised the most money. She has also worked on the Fill the Boot campaign to benefit the Muscular Dystrophy Association.

"There's nothing she can't accomplish," said Jackie Latham, her personal aide. "Everything she does is with meticulous perfection, determination."

She added, "I feel very blessed to have been part of her life for the past 13 years, and on graduation day, June 22, I'll be carrying two boxes of Kleenex."

e.moser@theday.com

Marley Robinson, 17, of Mystic, a senior at Fitch High School, hangs her photographs, in background, in the hallway for the Arts Cafe art show at the school on Thursday, May 24, 2018. Robinson has spinal muscular atrophy and has spent her entire life in a wheelchair. (Tim Martin/The Day)
Marley Robinson, 17, of Mystic, a senior at Fitch High School, hangs her photographs, in background, in the hallway for the Arts Cafe art show at the school on Thursday, May 24, 2018. Robinson has spinal muscular atrophy and has spent her entire life in a wheelchair. (Tim Martin/The Day)

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