Wish Foundation gives Moncton boy room to grow
Published Thursday December 4th, 2008
Marc-Antony DeGrace, who suffers from rare disorder, now gets to play in sensory toy room
When the Teletubbies characters pop out of the window on TV, Marc-Antony DeGrace, 8, cackles with laughter.
It doesn't matter how many times the youngster sees the clip on TV, he bursts out laughing every time, his laughter infectious to anyone in the room.
His mother Raymonde looped this particular part, and Marc-Antony is fixated on it.
He was enjoying his favourite show last night in his new toy room in his family's home in Moncton, surrounded by his parents and three volunteers with the Children's Wish Foundation.
The Wish Foundation recently granted the DeGraces their wish of a new sensory toy room for Marc-Antony.
The young boy suffers from a rare inherited metabolic disorder called Cobalamin-C deficiency which affects his cognitive and physical abilities.
Basically, Marc-Antony is not able to convert the vitamin B12 he absorbs from his food into the form of B12 that is required for the body to grow and develop properly.
When he was born premature in July of 2000, he was underweight. Try as they might, his parents Marc and Raymonde couldn't get their baby to keep food down. It took three weeks to get Marc-Antony to a healthy weight as he would throw up most food fed to him.
After months of seeing doctors, the DeGraces were finally able to get into a specialist who diagnosed Marc-Antony with the rare disorder.
As a result of this disorder, he has cognitive and physical difficulties, including a feeding problem, seizure disorder, developmental delay and visual problems.
Regardless, his parents say Marc-Antony is a happy youngster, especially when the Teletubbies are on TV.
"He's a very happy little boy," his father says. "He seems to be immune to pain or crying."
The sensory toy room, created for the family by the Children's Wish Foundation, isn't a typical gift many families ask for. Trips to DisneyWorld, pools and computers are the more popular gifts, says wish co-ordinator Marilyn Essensa.
The toy room features bright colours throughout and toys of all different sizes, shapes and textures. Huge, soft couches are in each corner for Marc-Antony to curl up on, and most of the room features soft corners so that he can't hurt himself when playing.
The colours and textures in the room are important for Marc-Antony's development, his father says.
"It wakes up his senses," he says.
Marc-Antony can't speak, but he finds other ways to let his parents know what he needs. When the Teletubbies clip stopped, Marc-Antony took his father's hand and pulled him toward the television, signaling that he wanted more.
He shouts, squeals, smiles, laughs and cries. His parents say he loves to snuggle before falling asleep and he loves to be tickled, especially by his father.
The DeGraces only moved into their current Moncton home last year. Marc-Antony had difficulty adjusting because he had known only one home his entire life.
The new toy room gives him his own comfort zone.
"I love (the room) because he loves it," Raymonde says. "He was kind of lost because all he knew was the other place, but now this is where he spends most of his time."
Marc-Antony is in Grade 2 at Ecole Champlain. He has a personal aid at his side at all times, and he keeps Teletubbies sounds on him to listen to with headphones.
He is also followed by a team of specialists including a physiotherapist, occupational therapist and speech therapist.
His father Marc wishes there were special schools for children like his, saying he believes he would learn more there.
There have been many challenges for the family over the years, but Raymonde says "you just adjust to every challenge."
"You just have to live the life because he's our kid and we love him," she says.
Vivian Smith has been with the Children's Wish Foundation since 1992. She says visiting with families after their wish has been granted shows her what all her fundraising really means.
Shelley Lawrence says Marc-Antony's wish is the first wish she had a hand in helping grant.
"I think it's wonderful," she says, noting that she has two children of her own.
The Children's Wish Foundation recently surpassed its 600th wish granted in New Brunswick and its 14,000th in Canada. The foundation will celebrate its 25th anniversary next year.
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