Glasgow High School student graduates, years after doctors said rare disease would kill her

Nicole Albano graduated from high school on Wednesday, capping a decade of defying medical predictions she would die by the age of 8.

The 18-year-old has reducing body myopathy, a rare muscle disorder marked by progressive muscle weakness. It's so rare, in fact, that Nicole was the sixth person in the world diagnosed with the disease. She wasn't expected to live past 8 years old, let alone graduate from high school.  

She cannot walk and uses a wheelchair. She also relies on a ventilator to breathe and cannot talk very loudly or clearly. She cannot hold a pencil or even turn the pages of a book. 

Nicole can use a laptop. She can slowly type and use a mouse. However, her mind races as she listens to those around her talk.

During an interview last week, surrounded by pets and family members, she let her mom, Jennifer Albano, tell her story. Nicole was diagnosed at 18 months and had her spine fused when she was 6 because she was literally collapsing in on herself and couldn't breathe. 

Nicole had said, "yes," she likes to write because it's hard for her to communicate verbally. 

But after the interview, Nicole sat up late crafting an email about that. It wasn't quite true though, she realized. 

"I answered yes but only because my brain kind of went blank," she said. "The real reason why I write is this: I don't get to experience everything that a normal teenager gets to experience. I'm kind of stuck in terms of experimenting and traveling and things like that or at least it's difficult enough for me to do that I don't get to do it very often if at all.

"Writing is the way I explore the world. It's the way I experiment and the way that I travel. It's the way that I discover what I think and what I believe. My writing holds my wishes and my dreams and my desires." 

She felt like she was being dramatic, so she cut it off there. 

"I could go on for a while, but I think that's good enough," the teen said. 

No choice but to graduate 

Nicole never considered not graduating. 

"There was no other option," Nicole said. "That's what people do." 

"What's the big deal?" she wanted to know, adding that school was actually pretty easy for her. Nicole is smart, after all. 

But Jennifer has met families, with children in situations not unlike Nicole's, who haven't pursued graduation. Instead of getting high-risk operations like spinal fusion, some choose hospice care. 

Others choose out-of-home placement, where children live in specialized facilities capable of addressing their health problems in a more formal setting. 

"I think a lot of people give up because of the stress level of everything," Jennifer said. "I'm glad (Nicole) thought it was so easy breezy."

It's hard to tell just how many students in Nicole's position do get a high school diploma. In Delaware last year, 67.6 percent of students with disabilities graduated.

But there's a large range of such disorders and some may hinder students more than others. For instance, a student could have hearing loss, low-vision, blindness, a learning disability, autism spectrum disorder or a chronic health disorder — or several at once. 

Nicole is also considered "medically complex," Jennifer said, which means she has intensive health care needs that require a nurse or someone extremely knowledgeable about her condition to be on hand at all times. 

In fact, Nicole's family consider that a more accurate descriptor of her condition. Nicole doesn't like the term disabled and considers her health problems among her biggest setbacks. 

She physically attended classes, accompanied by a nurse, through sixth grade. But frequent hospitalizations and difficulty navigating cluttered school hallways left Nicole homebound. 

Nicole also gets sick easily, which made going to school a risk. Last month she contracted double pneumonia, Jennifer said, and the family feared for the worst. 

"It took her down fast," Jennifer said, adding that Nicole has come close to dying multiple times. Because she's well past her expected life expectancy, it's hard to tell exactly what the future holds. 

"We just keep fighting and when she decides, or God decides ...," Jennifer said trailing off. "Well, until then, we'll just take it day by day." 

For now, to help her study, Nicole has Brad Catts, a tutor from Back to Basics Learning Dynamics Inc. The nonprofit provides educational consulting and helps students with individualized education plans or IEPs. 

Catts and Nicole's family work with teachers and staff from the Christina School District to get her schoolwork so she can do it at home. The tutor visits Nicole three days a week, for two or three hours at a time, to go through assignments and make sure she understands them. 

"She's very determined," Catts said, adding that Nicole struggled with subjects like chemistry and math but "she persevered." 

Essays and papers are also difficult because though Nicole excels at writing, she can't type very fast. Some assignments take her several hours to complete. 

"It's kind of amazing how she does all of her homework," her mom said. 

Jennifer said the Christina School District worked hard to make sure it was possible for Nicole to graduate and that the teen's teachers treated her just like any other student. 

"If she was sick, they understood," Jennifer said. "If she was behind, they understood." 

Nakia Fambro, the assistant principal at Glasgow High School, said to her knowledge, Nicole is the first student to take classes from home for four full years. 

At first, staff members were nervous because they weren't sure what Nicole was capable of. But those fears were quickly allayed, and the school set out to give Nicole access to everything they possibly could.

Art teacher Laura Donahue, who drove to Nicole's house to give her lessons, pushed administrators to download a special computer program so the teen could practice her illustration skills, and the district's assistive technology department gave her a special keyboard and mouse, Fambro said. 

"She's had quite a few little gadgets that I would love to have," Fambro said. 

Nicole is graduating with a GPA of 3.5 and is ranked No. 48 in her class of 219 students. 

"It's amazing," Fambro said. "She's done very well." 

Donahue said she visited Nicole on Wednesdays after school and would spend an hour working with her on her art. 

"She’s very smart," Donahue said. "Very intuitive, very creative.

“She’s just so brilliant trapped in that struggling body. But it’s wonderful, too, because if life can give you so much hardship and you can overcome it, you're already better off than many kids graduating, who haven’t seen hardship yet.”

Overcoming obstacles

Nicole hopes to one day live by herself, independent of her family. 

"She still has all these hopes and aspirations to be a writer or a publisher," Jennifer said.

Nicole would also like to go the University of Delaware, though it could be difficult for her to attend classes — Medicaid only reimburses the family for a nurse if Jennifer is at work. If any of Nicole's classes are at night, her mom or another family member would have to accompany her. 

Living on campus would be preferable, but comes with obstacles of its own, as does Nicole's dreams of going to New York University one day. 

She got to visit the campus recently, and it wasn't very wheelchair accessible, Jennifer said.

"But she loved it," Jennifer said. 

Nicole is also in a book club for teenagers, which meets once a month at Barnes & Noble. 

One of her favorite authors is John Green, who wrote "Paper Towns" and "The Fault in our Stars," a novel about two teenage cancer patients who fall in love.

In her free time, Nicole blogs and listens to Korean pop music. She's an animal lover and has four chinchillas, three guinea pigs and a cat, which lives with her dad. The newest addition to the family is a puppy, who walks beside Nicole's wheelchair, sits by her feet and likes to curl up in bed with her. He's being trained as a service dog. 

Jennifer says Nicole has never let the fact that she's in a wheelchair keep her from exploring her passions. 

"She'll tell you what she wants," she said. "She just doesn't have the tools to physically do it, so she needs people around to help her." 

Jennifer hoped Nicole graduating would inspire other students with disabilities to pursue their own dreams. 

"Regardless of the struggles they face and the families face, illness or disability, it is possible," Jennifer said. "Don't give up. 

"Seeing her go up on the stage, walking up to get her diploma, I'm just amazed that she's doing it. She just gives me so much strength." 

Fambro said she too hopes Nicole will inspire students with disabilities. She said working with the teen has been a huge learning experience and has pushed school district staff to look at what resources are available and how lessons can be adapted for students who can't physically come to class. 

Now they can more confidently say to families: We've done this before. This is possible. Your child can graduate. 

“Sometimes it's not just the kids," Fambro said. "It's the parents because they're nervous. Because they think the only option is to have them come into the building.

“Nicole’s parents were adamant: 'This is what we want.' And we had to meet that bar.”

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Contact Jessica Bies at (302) 324-2881 or jbies@delawareonline.com. Follow her on Twitter @jessicajbies.

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