Adam John Hopkins photo
Marlene Benlolo and daughter, Rachel, 3, are clients of Zareinu, a Jewish day school and treatment centre for children with physical and developmental challenges. Rachel took her first steps recently — 14 of them, to be exact — and Ms Benlolo says the centre deserves much of the credit.
Vaughan
November 27, 2008 11:28 PM
Caroline Grech
There once was a time when Vaughan couple Marlene and Isaac Benlolo thought their daughter Rachel would never walk.
Now they have renewed hope as she took her first few steps recently — something doctors told them not to expect.
Rachel was recently diagnosed with Rett syndrome, a neurodevelopmental disorder that typically affects girls. The symptoms can include loss of verbal and motor skills and distinctive hand movements.
Rachel is now three and a half but her diagnosis came only six months ago, after years of waiting and testing and wondering what the problem was.
“It’s a very difficult road because you need to know what you’re looking for,” Ms Benlolo said, adding that there is a very specific blood test to check for Rett syndrome. “It’s devastating.”
At first, Ms Benlolo noticed Rachel wasn’t doing what other babies her age could do, such as roll over and hold her head up.
Ms Benlolo knew something was wrong, but it was taking a while for doctors to figure out just what the issue was.
“I thought she hated music. Well, I couldn’t be more wrong. Music is the key to Rachel’s soul,” Ms Benlolo said. “It was difficult going to baby grops because she would cry and it would be really stressful.”
It wasn’t until she started to take Rachel to Zareinu, a Jewish day school and treatment centre in Thornhill, that Ms Benlolo started to see major improvements in her daughter.
In fact, she credits much of Rachel’s progress to the team at the Thornhill centre.
The facility provides special education and individualized therapies to children who have a wide range of physical and development challenges.
“This school has carried us through the most horrendous time of our life,” Ms Benlolo said. “If it wasn’t for them, I would be bankrupt and my daughter would absolutely be in a wheelchair. I wouldn’t know what to do.”
Since her time there, the changes in Rachel have been dramatic.
“I was so in shock. She’s laughing and trying to sing. She’s touching the kids next to her or she’s trying to get the teacher’s attention. You have no idea the difference,” Ms Benlolo said.
But if those changes weren’t enough, the little girl, who doctors gave a slim chance of ever walking, took everyone by surprise recently.
A TV news crew was in the centre doing a story on the annual fashion show fundraiser held last week, when all of a sudden, Rachel started walking, taking 14 steps across the room.
The dramatic move inspired a major reaction from the staff who rushed up to Mr. Benlolo when he arrived to pick her up after work.
“She walked across the room. It was just insane,” Ms Benlolo said.
Part of the approach the centre takes to therapy is to have a team of specialists on hand who get to know each child individually.
Instead of a parent shuttling their children from one specialist to another, the entire team works together on the child.
With a staff of therapists that includes speech and language pathologists, development service workers, occupational therapists and music therapists, there is no shortage of help.
But like many centres dealing with children with special needs, money is a factor.
“We need to raise 80 per cent of our money,” Randy Spiegel, executive director of Zareinu said, adding the centre doesn’t fit into a specific government program to receive funding.
The centre treats about 100 children at any given time and the cost to offer full-time programming to each child is between $40,000 and $50,000.
The centre subsidizes the costs for parents, bringing actual output from parents to about $21,000.
If parents can’t pay the $21,000, they help further, Mr. Spiegel said.
A fashion show was held last week to raise funds and in addition to models, Zareinu students also walked the runway.
“It’s incredible when the Zareinu kids walk the runway,” Mr. Spiegel said.
Go to www.zareinu.org for more information.