A 15-year-old boy with the genetic disorder has started a fundraiser to help another teen with disabilities finish school.
Gabriel Donovan, from Albany in New York, was introduced to 14-year-old Lilly after his mother, Maureen O’Brien, took a tour of a local nursing facility for fragile children and young adults living with ventilators.
Ms O’Brien told Yahoo Lifestyle she discovered a connection between Lilly and her son after finding out the young girl had attended the same summer camp as Gabriel, who has neurofibromatosis.
Still Ms O’Brien didn’t know her son would feel so strongly about helping out the St. Margaret’s Center resident after learning she was in need of some funds.
“I came home that night after touring, and I said to Gabe, ‘I met a girl who goes to Double H Ranch and she shared with me that there’s a piece of assistive technology she really needs for both her ability to communicate better with people and finish school and to do a couple of other things, and it’s unaffordable to her’,” Ms O’Brien recalls of her conversation with her son.
“So Gabe said, ‘Well, we have to figure out a way to help her.’”
According to Gabriel and Ms O’Brien, Lilly is in need of US$16,000 (about AU$24,000) to pay for the assistive technology — including a ventilator that she requires for breathing, a wheelchair and an eye-tracking device — that she would need to start high school.
And in order to make that money, 15-year-old Gabriel immediately thought to use the power of social media.
“We figured that the best way was to sell something and get money for it,” Gabriel told Yahoo Lifestyle.
“So we thought about the water bucket challenge, where we would have something that people can get and then once they get it, they would nominate people to get theirs, and so on and so forth.
“When people get a chance to be part of a happy thing, they take it.”
Gabriel quickly set up a visit with Lilly at St. Margaret’s Center, where he expressed to her he wanted to help her out.
In that moment, Gabriel explains Lilly was both surprised by the offer and happy that he was willing to fundraise, likely because kids like Lilly “wouldn’t expect someone to help them”.
For the teenage boy, however, helping Lilly wasn’t something he had to think much about.
“I’m an individual with a disability as well. And I use technologies,” Gabriel said.
“My family is lucky enough to have a job where we can afford them. And I feel sad that kids like Lilly can’t get what they need.”
He decided the items should be decorated with flowers because of Lilly’s name and the floral decor in her room.
Later, he called the design the Adirondack Lilly.
“Gabe came home and went right to work,” Ms O’Brien said.
“That was in June I think, towards the beginning of the summer.”
“And then August 1st was when the T-shirts were ready,” Gabriel added.
The company that Gabriel and Ms O’Brien teamed up with to print their custom items was no coincidence as well, as they had been aware of a custom apparel and promotional products business that hired people with developmental disabilities, Spectrum Designs.
Now, just weeks after beginning to sell the shirts and bags, the Adirondack Lilly fundraiser and the social media campaign surrounding its fundraising are taking off.
Gabriel and Ms O’Brien explained some of the most exciting wins thus far were when American Idol finalist Madison VanDenburg, jockeys at the Saratoga Race Course and players for the Albany Empire football team proudly displayed their Adirondack Lilly shirts on social media.
Anne Schneider Costigan, senior vice-president of communications and development at the Center for Disability Services, told Yahoo Lifestyle the widespread recognition has also been amazing for the St. Margaret’s community.
“We have grown based on community need and on community support. And the support for this campaign is truly overwhelming,” Ms Costigan says.
“Our centre has always received that community support, and this is another example of how our community is pulling together in order to meet the need of Lilly.”
Gabriel said he was already halfway to his fundraising goal and hoped the Adirondack Lilly campaign could continue to raise funds for St. Margaret’s Center and the Center for Disability Services through their donation link, so that other people in need can have access to all of the necessary technologies.
Still, he says he should not be praised for his efforts.
“I don’t really feel like I should be commended for it,” Gabriel said.
“This is just what I need to do and what I should do.”
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