MIDDLEBURY, Conn. (AP) — Gaby Steele was born with congenital muscular dystrophy. Her mother, Jackie, said doctors were never able to figure out what type of muscular dystrophy she had.
During her cesarean delivery on Jan. 15, 2001, it was discovered that Gaby's neck was fractured and her arms broken. Gaby had to stay in the natal intensive care unit at the UConn Medical Center for nearly three months. She had a breathing tube put in her neck. She would also have to be hooked up to a ventilator when she was sick.
Gaby was confined to a wheelchair and unable to talk.
"She would communicate with her eyes and facial expressions," Jackie Steele said. "She would raspberry people and close her eyes if she wanted to be left alone." Other times she would do it playfully.
She wasn't able to learn sign language because of the limited use of her arms.
Gaby's family took some risks to help Gaby live like a normal child. They would put cushions under her on top of a slide and catch her when she reached the bottom. One day her brother, Joey, made a mound of snow, had her wrapped up in winter clothes and going airborne on a sled in her yard in Prospect.
"I came running outside like, 'What are you doing?' Turns out she wasn't screaming she was laughing," Jackie Steele said. She would also spin around in her wheelchair, dancing to music.
The nonprofit organization Dreams Come True installed a hot tub at her house. Gaby's father would hold her up close enough so she could kick in the water. The jets in the tub are therapeutic for children with muscle disease.
Gaby had been homebound earlier this year, as her mother was afraid she'd catch the flu.
Gaby died in her sleep on April 25. Jackie said it came unexpectedly because she wasn't sick at the time. "She had been doing so good," she said.
Middlebury resident Denis Belmont was Gaby's in-house nurse for seven years. She would often bring her daughter, Julia, to play with her. Julia would read books to Gaby, play musical instruments with her as part of her musical therapy and even go to see an Elmo movie with her.
"I felt bad for Jackie," Julia said.
She was already pretty crafty, having made flip-flops and wallets out of duct tape. She decided to make bracelets out of colored duct tape with a paper cutout of Gaby's favorite animal, an owl. Jackie said Gaby's favorite book was "Owl Babies." She would read it to her every night before bedtime.
Denise and Julia asked the principal of Middlebury Elementary School if she could sell the bracelets to her classmates and donate the money to the Muscular Dystrophy Association for research.
"A girl came up to me with a penny and asked if this would work, I said sure," Julia said. A teacher wrote a check for $50.
The students' demand for more and more bracelets resulted in all-night bracelet-making sessions at the Belmont household. Denise's husband, Eric, said they would have an assembly line in the kitchen pumping out the bracelets.
By the end of June, they had raised $590 at the school. Her Girl Scout Troop 6400 matched that amount.
"Nobody at Middlebury Elementary School even knew my daughter," said Jackie, who was touched by the students' generosity.
On Sept. 2, Julia presented a check for $300 to the Muscular Dystrophy Association at the Stillwood Inn in Wallingford during the annual Party For A Cure fundraiser. Julia told the crowd Gaby's story and sold 60 extra bracelets, making another $385 within 15 minutes.
Jim Zandri, owner of Zandri's Stillwood Inn, was impressed that such a young girl would take it upon herself to make the bracelets and make a difference in honor of her friend.
"People were so touched they lined up and gave her fives, tens and 20's," Zandri said. The Sept. 2 fundraiser brought in $37,509 total for the MDA, Zandri said on Thursday.
Along with other donations from friends and family, the Belmonts ended up raising $1,500. Some of the money went toward buying a bench made of recyclable material and two plaques celebrating Gaby's life.
The bench and plaques will be installed at Brooksvale Park in Hamden. Denise Belmont hopes to unveil them on Oct. 13 during the park's fall festival. Other funds went toward the park's Raise the Roof fundraiser to build a new animal barn.
Information from: Record-Journal, http://www.record-journal.com