Share the Voice gives disabled kids special tricycles -- and big smiles

Less than a month ago, Alexandra Spear got the surprise of her young life.

The Westbury Fire Department, where her father has been a volunteer for 25 years, closed off her East Meadow street on June 12, and dozens of family, friends and supporters came together to help the nonprofit group Share the Voice deliver a special tricycle to the 13-year-old that gives her newfound independence at home.

"It was amazing," said Alexandra's father, Rob, 43, a paramedic for the Nassau County Police Department, of the special delivery. "It was one of the most humbling moments I've ever had."

Alexandra has tuberous sclerosis, a rare condition that causes tumors to grow on her brain, heart and kidneys, leading to significant cognitive and motor-skill impairments, as well as seizures.

Spear and his wife, Denise, found out about Share the Voice through Facebook posts about tricycle deliveries by one of the nonprofit's board members, Chrissy Holman, whose son received one and with whom Spear went to high school. Spear said that while Alexandra had ridden a tricycle as therapy at school, he and his wife had never seen her on it.

"When my wife and I saw her ride a bike independently and be able to steer it, it was amazing," he said. "She absolutely loves it."

Alexandra's delivery was the 28th tricycle giveaway organized by Share the Voice, a West Babylon-based group formed in 2013 to help disabled children gain access to expensive adaptive tricycles and share in a childhood pastime with others.

The group was started by Lynda Graham, a mother of three from Lindenhurst whose 8-year-old son, John, has peroxisomal assembly disorder, a condition that affects all his senses, motor skills and cognitive abilities. He is nonverbal and uses an adaptive wheelchair-stroller.

When John was in kindergarten in 2011 at James E. Allen Elementary School in Dix Hills, which is part of Western Suffolk BOCES, a physical therapist there told Graham he had a surprise for her.

"One day I walked in and the PT [physical therapist] said, 'I have to show you something.' John came riding around the corner on a tricycle in the school. And it just never occurred to me that that was something he would ever be able to do -- just something fun and not in a wheelchair and not in a piece of regular equipment."

At the time, her second-oldest son, Tyler, now 5, was just a baby (she has a third son, Christopher, 2 months old), and new thoughts of them being able to ride bikes together started running through her head.

The family wanted to get a tricycle for home, but the trikes are expensive -- from $1,500 to more than $6,000, depending on the manufacturer and customized features, which can include a special pulley system and handlebars, harnesses and push bars. Insurance wouldn't pick up the cost, Graham said, because the trikes are deemed recreational instead of therapeutic.

A Staten Island nonprofit that doesn't typically serve Long Island assisted with the purchase of a trike for John.

A voice for LI kids

Seeing no similar organization on Long Island, Graham -- who has a master's degree in industrial and organizational psychology from Hofstra University, and a bachelor's in therapeutic recreation from York College of Pennsylvania -- put her organizational skills to use and started Share the Voice. The group's first event was an online jewelry fundraiser, followed by a comedy night. The group gave out its first tricycle in June 2013. The recipient was Katie Soehl of Lindenhurst, who has epilepsy and Rett syndrome, which affects her motor skills and causes autistic-like behavior.

Share the Voice's seven-member board includes a president, treasurer and director of awareness. Graham's husband, James, is a board member, and the group also has a pro bono attorney and a photographer who provides her services for free.

"We have 10 or so committed volunteers whenever we need them," Graham said. "And then everybody else who comes to the giveaways."

Share the Voice has purchased all of its trikes through Rifton, an upstate maker of adaptive equipment. Rifton gives Share the Voice a discount, but the company and the nonprofit don't have an exclusive arrangement. Graham said she approached Rifton because she found it to be the most popular brand among schools and less expensive than competitors. Plus, her son John used a Rifton with good results, and she had heard positive feedback about others' experiences working with the company.

The trikes come in three sizes, with adjustable seats and backrests to accommodate a child's growth spurts over several years. It takes up to two weeks for an order placed with Rifton to be shipped to Share the Voice volunteers, who then assemble and deliver the trikes.

Since the 2013 giveaway, Share the Voice has raised about $40,000, largely through donations and fundraisers. And through the organization's "Little Voices" outreach program to youth groups and schools, Share the Voice raises awareness about disabilities, which in turn helps spur fundraisers and aims to deter bullying.

"First I like to go in to speak to the kids and have John ride around on his tricycle, show them how it's different, why it's needed and why we have to raise money for it . . ." Graham said. "Why it's more expensive than their Walmart bikes or Target bikes. And then usually the organization offers to do a fundraiser for us. And they'll set a goal that they want to raise enough money for one or two tricycles."

On May 15, 750 students and staff members at the Polk Street Elementary School in Franklin Square participated in a walk-run to benefit Share the Voice. The school raised $1,200.

Principal Gil Torossian said it was the second year in a row a committee made up of students, parents and teachers chose Share the Voice as the annual walk-run's beneficiary, after seeing how overcome with joy Joshua Barlow of Elmont was in a video posted on Share the Voice's website. , Joshua received his tricycle thanks to the school's efforts last year.

"They were so moved," Torossian said. "They couldn't believe they made a kid's dream come true. They said, 'We have to do it again.' "

That response is what Graham had in mind when she named the nonprofit, which she said is about the shared experience disabled children can have with those who don't have disabilities, through the bike-riding rite of passage.

Though not all the recipients of Share the Voice trikes are nonverbal, Graham said, "all the kids share the same laughter, joy and smiles when riding. The same 'voice.' "

Waiting list

Share the Voice delivers trikes as soon as it raises enough money for the next child on its list, after a brief review of the applicant's needs (families are not asked about financial status). The nonprofit delivered five trikes in 2013 and has matched that number so far in 2015. Its busiest year for giveaways was last year, when deliveries were made to 18 recipients.

The nonprofit has received a community grant from Walmart in Farmingdale and a corporate sponsorship from Wells Fargo in the past, but with a backlog of 14 applications, Voice officials recently hired a part-time professional grant writer to attract additional funds from local governments and corporations to help meet the demand. The application can be downloaded at sharethevoice.org.

The surprise factor is intentional.

"We want to make it as fun and positive an experience as we can for the child and the family," Graham said of keeping the delivery a secret. Additionally, she said, by bringing along the community, the group is raising awareness showing supporters where their money is going.

Kristen Faicco's daughter, Ava, a 10-year-old with cerebral palsy who attends Dayton Avenue School in Manorville, received her tricycle in December 2013.

Ava is nonverbal, uses a wheeler to help her walk and needs assistance with pretty much everything, Faicco said.

Faicco, of Manor Park, applied for a tricycle at the suggestion of a case manager at Angela's House, a Hauppauge-based nonprofit that assists families of medically frail children. She said she knew she would be placed on the waiting list, but didn't hear anything for several months -- until the day the Manorville Fire Department brought along Santa Claus to deliver the tricycle. Faicco said Ava at first was a little overwhelmed but was soon ecstatic. "She wouldn't get off of it," Faicco recalled.

In addition to allowing Ava to ride at home with her siblings Laila, 6, and Robert, 4, the tricycle is incorporated at school. Ava uses it in gym class and during recess, and it serves as a reward if she finishes her schoolwork early, said Faicco, who brings the trike home on weekends and during the summer.

Faicco's family has since donated $1,000 to Share the Voice.

"It's a small amount for a bike," Faicco said. "It's a large amount for us, but we wanted to do what we can."

On June 14, Share the Voice brought together a group of past recipients and supporters for a picnic at Belmont Lake State Park in North Babylon. Graham said about 35 people attended. There were hand stamps, food, face painting and, of course, rides through the bike trails.

"It was very laid back," Graham said. "Just to be in an accepting environment, where these were their peers," was heartening.

She added that it was also beneficial to the recipients' families. "It's great to meet the other families that have similar needs," Graham said. "It's about sharing information and seeing what we can learn from each other."

Volunteer spotlight: Danielle Levine

Danielle Levine got more than she expected when she agreed to take photos at a Share the Voice bicycle giveaway in late 2013.

"I went in expecting to take a couple of pictures and went away with a lot more than that," recalled Levine, 31, of East Meadow. "I didn't expect to be so moved by it. Every time after that, I can't wait to do it."

Levine said she has photographed about a dozen trike giveaways and two Share the Voice fundraisers. The photos are posted on the nonprofit's website and Facebook page, and sent electronically to the recipient families. They are also posted to her personal Facebook page and her photography business website.

Levine is a business support specialist at a major bank who also runs Danielle Kelly Photography from her home as a side business. She is self-taught, and Kelly is her maiden name.

She said the birth of her son, Brandon, now 3, and her work with Share the Voice inspired her to devote more time to photography, which she had done part-time while studying criminal justice at Nassau Community College from 2001 to 2003. Levine moved on to study pre-law at Adelphi University in 2003 while also pursuing acting. She left school that year to tour with the musical "Rent" before going into banking when the tour ended in 2004.

Levine said she decided she wanted to take photography more seriously after she started volunteering with Share the Voice. She specializes in family portraits, newborns and children, but she also photographs engagements and other special events.

"I can thank Share the Voice for drawing me back into photography," she said.

During Share the Voice giveaways, Levine said she is there to "snap away" and capture the day for the organization and the family of the tricycle recipient. She said recipients understand why she's there and she's able to connect with them, making her feel personally invested in each event.

"It fills my soul to be there," Levine said. "It almost feels like it was a calling."

Ways you can help

Share the Voice needs volunteers to show support at its giveaways and lend a hand with its Little Voices program, which seeks out local Boy Scout and Girl Scout troops to help spread the word about the group's mission. Anyone interested in the organization can also arrange fundraisers on their own to sponsor a tricycle.

Aside from its giveaways, which happen as soon as equipment is acquired for the next recipient on the waiting list, the next big fundraising event will be hosted by the Lindenhurst Village Men's 35-and-over Slowpitch Softball League. Share the Voice will be a beneficiary of the Brian Schleicher Memorial Softball Tournament on Sept. 12.

For more information, call Lynda Graham at 516-603-2232, or visit sharethevoice.org; info@sharethevoice.org.

You might consider . . .

Matthew's Giving Tree Foundation offers financial assistance for buying adaptive equipment for children, including tricycles, strollers and activity chairs. The group -- named for Matthew Aiden Cameron, a West Sayville boy with a congenital heart defect who died in 2010 -- also provides scholarships for therapies and home modifications that aren't covered by insurance. The nonprofit holds two major events a year, a family fall festival and an adult casino night in the spring. The fall festival, scheduled for Oct. 24 at the Long Island Maritime Museum in West Sayville, will for the first time include a 5-kilometer race.

For more information,call Shannon Cameron at 631-244-2710, or email shannon@matthewsgivingtree.com or visit matthewsgivingtree.com

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Candle In The Darkness Foundation aims to put smiles on the faces of children with terminal illnesses. Its single fundraising event is Kristen's Walk to the Water, held each May. The event is named in honor of Kristen Leigh Kessler, an outgoing 18-year-old from Sayville who died in 1993 of leukemia. The annual walks -- from The Common Ground in Sayville to Sayville Marina Park and back -- usually raise $22,000 to help fulfill wishes that have ranged from painting a bedroom to a trip to Disney World to paying off a college tuition bill.

For more information, call Karin Tellier at 631-589-4425, or visit kristenswalktothewater.com

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For more volunteer opportunities, contact the Long Island Volunteer Center at 516-564-5482; longislandvolunteercenter.org