Scarborough foundation funds fun for children with disabilities
SCARBOROUGH — It would be hard to imagine a better morning for a bike ride.
As sunshine splashed over Memory Lane, Coleman and Annie Nee took turns riding a tricycle July 20 on the quiet dead end street, cheered on by family and friends.
"It was cool. They enjoyed it, no doubt," Dickie Nee said about what was no ordinary summer ride.
Coleman, 15, and Annie, 10, took turns riding an adaptive tricycle with adjustable seats and pedals, all-terrain tires, a backrest, storage tray and handbrakes. At times they were guided by their father Dickie, and cheered on by their mother, Katie Nee.
At times they rode alone, surrounded by the Nees, occupational therapist Stephanie Leonhartt and physical therapist Dora Gough.
"I am thrilled and touched and choked up," Gough said. "To see Coleman pushing up that hill gave me a lump in my throat."
The tricycle, made by New York-based Rifton Equipment, costs about $2,500, and is not covered by insurance plans. Money for the tricycle came from the Robbie Foundation, established by a Scarborough couple determined to help families who need adaptive equipment and services for children with developmental disabilities.
Coleman Nee, who is entering Scarborough High School in the fall, has cerebral palsy, scoliosis, cognitive impairments, asthma, emphysema and one lung. The first part of his summer was spent in the hospital breathing through a ventilator, Dickie Nee said.
Annie Nee, entering Scarborough Middle School in the fall, has Rett Syndrome, a rare genetic disorder affecting her nervous system and causing developmental problems. She also has scoliosis and hip dysplasia. Last fall, she participated in clinical trials at Children's Hospital in Boston testing the effectiveness of hormonal treatments for Rett.
Both children needed more coaxing to get off the tricycle than climbing on it, and Dickie Nee teasing faked pain as his daughter squeezed his fingers after her ride.
"Oww, oww," he said, beaming the entire time.
Robert and Lynne Gierie founded the Robbie Foundation a little more than two years ago. It is named for their son, a former classmate of Coleman Nee, who has cerebral palsy.
The school connection, and a foundation application packet compiled by Gough and Leonhartt, made the tricycle a reality, Katie Nee said.
"It's real now. This is what the Robbie Foundation is all about," Lynne Gierie said as the Nees rode.
The Nees are a large family that has seen some misfortune. The couple raised seven children, and their son Seamus died in 2003 in a car accident shortly after Annie was diagnosed with Rett.
The chance to see her brother and sister spend more time outside thrilled Bridie Nee.
"It's really awesome," she said. "They can get outside with their friends."
The exercise is a clear benefit, but Gierie and Gough said the chance for children like Coleman and Annie to spend time with peers is critically important.
"Our goal is to see kids immersed in communities," Gierie said.
Since registering the foundation as a nonprofit in May 2010 and earning $2,000 in a jewelry sale at their home off Route 22, Lynne Gierie said the Robbie Foundation has provided equipment to at least 30 applicants. Some items may be as inexpensive as $80, and one adaptive lift cost about $5,000, she said.
Fundraising events expanded to include a golf tournament in September at Nonesuch River Country Club, an October gala at the Landing at Pine Point and a $15 cookbook available on the foundation website.
Increased attention creates increased generosity and need, Gierie said. Each quarter, a foundation committee reviews applications; requests average about $1,500.
Gierie said she knows there are at least $3,000 of requests already received for review, all from Maine families. A long-term foundation goal is to expand services through New England.
Applications for assistance require three letters from therapists or doctors outlining the needs and how the service or equipment will help a child. Gierie said applications typically come from service providers, but requests from parents are always welcome.
"We have not had to refuse any requests so far, but we may have to prioritize," she said. "It is clear to us there are a lot of unmet needs out there."
Not all needs are met as publicly as last week's presentation to Coleman and Annie Nee, but Gierie said her satisfaction remains consistent.
"The gratification is definitely the feedback we get from kids," she said. "Just the smiling faces."