Len Benoit is a personal trainer who works 16 hour days to build his business and help his clients achieve great health and fitness.
Yet the one person he’d like to help most, he can’t. Benoit and partner Aida Kadic’s one-year-old son, Kaden, can’t sit or crawl yet on his own. Kaden has been diagnosed with hypotonia, a state of low muscle tone and control.
Its cause in Kaden is a rare chromosomal deletion that affects his motor nerve control by his brain. The baby is missing some genes along chromosome two, but the deletion is so rare doctors can’t predict his future.
This week, Kaden started his third, two-week block of specialized physiotherapy called CME with physiotherapy Simona DeMarchi, founder and director of North York-based Blue Balloon Physiotherapy.
CME or Cuevas Medic Exercises was created by Chilean physiotherapist Ramon Cuevas in 1972. CME is an avant-garde approach inspired to provoke automatic motor responses in motor-delayed children three months of age and older with need of the child’s co-operation or motivation.
CME is not covered by OHIP. DeMarchi moves Kaden’s body through a series of exercises during intensive 50-minute sessions.
DeMarchi trained under Cuevas in Chile. She is the only level 4 certified CME physiotherapist in the world.
“She’s our angel,” Benoit said of DeMarchi. “She’s my best friend. I see so much hope in her,” Kadic said. “Kaden is responding really nicely to CME. His head control is much better. It’s God-given luck Simona happens to be in Toronto.”
But the family, who lived in Etobicoke up until a few months ago and now call Mississauga home, cannot afford ongoing CME treatment, which costs $150 a session or $1,500 for a two-week block of treatment.
Two-week treatments are followed by two-week breaks.
“Going into the first block (of treatments), we knew we wouldn’t be able to afford ongoing treatment,” Kadic said. “It’s hard to accept money from family, let alone ask friends and strangers.”
Last month, clients of Benoit’s Etobicoke-based Fit 1 Boot Camp, led by client Leah Cook, organized a fundraiser at a Bloor West Legion that collected more than $10,000 to help with the cost of Kaden’s CME physiotherapy.
Benoit and Kadic were moved to tears as they recalled the generosity of both the clients who organized the fundraiser and the people, including strangers, who attended.
“(M)any of us on the periphery feel we need to become the “village” to help get Kaden literally up and running,” Benoit’s Etobicoke client Sandi Hymers said. “I sometimes think that it’s hard enough ‘doing a life’ when you are 100 per cent. I’d like to see a little guy like Kaden have a fighting chance at a full life.”
Benoit said asking for help did not come easy for him. “I’ve never asked anybody for anything in my life,” Benoit said, sitting with Kaden on his lap. “It was so hard to put what is so private out so publicly to everyone. My brother-in-law wrote a letter on Facebook. ‘It takes a village to raise a child’ and he asked everyone to be Kaden’s village. I cried like a child. It was so hard to read.”
Complete strangers donated on Kaden’s website.
“Donations started coming in one, then another one, then another one,” Benoit recalled, his voice breaking with emotion. “People were sending texts and emails asking how they could help. Kids were giving us money from their piggy banks. I’m not sure anything was harder than that. People are beautiful. There’s a lot of good people out there who just want to help.”
This week, CME physiotherapist DeMarchi began a third, two-week block of daily treatment with Kaden. CME therapy offered in the community is simply not sufficient, DeMarchi said, to see improvements in children with complex needs.
“We’re trying to provoke Kaden’s brain to make connections (to fix) whatever happened in his development with the deletion on his chromosome map,” DeMarchi explained of the therapy that provokes improved motor control. “We’re trying to encourage sitting, crawling, keeping his weight on his hands, movements of a child typically does at a year old.”
DeMarchi reported Kadic has already booked CME therapy blocks for Kaden with her throughout 2013.
“We don’t know what will happen with Kaden over the course of his life,” DeMarchi said. “We want to give him as much therapy as possible to see how far he can go. Aida is convinced he will walk independently. But it’s a long course of therapy. It’s a marathon, not a sprint.”
Teya is a case in point. DeMarchi treated the little girl from seven months old until age two-and-a-half. Teya has an underdeveloped cerebellum and could not sit, walk or talk. She is also deaf. Cuevas then worked with Teya from age four-and-a-half to eight-and-a-half. Today, DeMarchi reported Teya walks independently, gets around on her own and is “doing far more than people predicted she would do.”
DeMarchi is convinced CME therapy will benefit Kaden.
“I wholeheartedly believe if Kaden has the ability to become independently mobile, this is the therapy that will get him there. Whether his brain makes that step, we have to see,” she said.
Kaden is also far-sighted and requires glasses to see properly. When he was first born, it was his hearing not his hypotonia that concerned doctors. After birth, he was rushed to the neonatal ICU, where he stayed for three days. After numerous tests, Kaden was diagnosed with auditory neuropathy spectrum disorder, which can range from profoundly to moderately deaf to not deaf at all.
Kadic and Benoit learned Kaden’s auditory nerves are too thin, ruling out a cochlear implant to help him hear. Soon Kaden will start speech therapy. “I think my kid hears,” Kadic said of Kaden, showing this reporter cell phone video of Kaden signing Itsy Bitsy Spider and repeating the sound “Oh oh” 10 times on a car ride.
Kadic is determined to see her youngest child walk, talk and lead a full life.
“I refuse to believe anything over than he’s going to be just fine,” she said. “I’m going to watch him play with his brother (Aidan, 8). He’s going to grow up walking, talking, listening and playing just like everyone else... “This little guy has taught us so much. We’ve been through so many emotions. We love him so much.”
Visit www.helpkaden.com to donate to Kaden’s CME therapy costs. Donations may also be made at any TD Canada Trust bank branch to the account “Kaden Ermin Benoit”, account number 10362 004 06346324520.