Article appeared in the Sept 22, 2011 issue of the Interlake Spectator…
When one meets 15-year-old Manami, one is readily captivated by her sunny glow and pleasant demeanour, which moves one beyond the physical disability that she has suffered since birth. Despite Manami’s inability to communicate verbally or perform most basic tasks due to spasmodic limbs, a vibrant and alert teenaged girl shines through.
Manami, who has lived her whole life with Cerebral Palsy, has been well cared for by mother, Chiemi Beyette, even surprising doctors who predicted that Manami would never walk. Through various physical therapies, including Osteopathy, Physiotherapy, and then through an “extremely helpful” program, called “Doman’s Method”, Manami was able to sit and eventually take steps . Today she still relies on a wheel chair, but is able to walk short distances.
Chiemi’s hope is to raise up her daughter even further, by taking the risk that may, after all, help her to make the leap to a more independent lifestyle, with a treatment that utilizes stem cells, that has some people convinced that a range of health conditions can be greatly alleviated with it.
“My wife started researching stem cell therapies on the internet. One thing led to another and we found (a treatment) that seemed beneficial and low risk,” said Tim Beyette, Manami’s stepfather.
“It’s not a cure, because Cerebral Palsy isn’t a disease. It’s an injury… It improves some of the complications of Cerebral Palsy. In Manami’s case, there’s a possibility of improvements in reducing spasticity, being able to speak, (reducing) drooling, and decreasing seizures,” he said. “Any improvement would be well worth the effort, and well worth the money we are going to spend.”
The price tag for a single treatment is a hefty $20,000, plus expenses. It is done in only a few locations in the world–Panama City, China, India, Germany, the last of which has been able to operate because of some European Union loopholes.
“The testimonials claimed good results…We talked to a family in Winnipeg who took their 46-year-old son for the same treatment in China.”
“We told the doctor that’s what we wanted to do. She really didn’t say anything,” said Tim. “I can’t say what doctors here would say about this therapy. I suppose some would be very enthusiastic, and would be quite interested in a new therapy. There might be others who would not be—That’s just me speculating.”
The Cerebral Palsy Association, of which Beyette is a board member, does not endorse the treatment. However, they do not have a position against it.
“They’re supportive,” said Tim. “In fact, they’ve been helping us to sell tickets.”
The treatment is only a few years old, and given on an out-patient basis.
“I first worried what are the side effects (potentially a viral infection from the spinal injection of stem cells), but after reading the testimonials, and talking to people going through it, it eased my mind,” said Chiemi. “The cells are rigorously screened.” I just want to do anything that can possibly help her get better,” she said.
The procedure involves harvesting stem cells from the patient’s own bone marrow, and from babies’ umbilical cords. After processing, the stem cells are injected directly into the patient’s spinal column. They travel up into the nervous system and into the brain, Tim explained.
“This particular treatment has been approved by the Catholic church and Southern Baptist Association,” said Tim.“Manami has been approved (for treatment at the Panama clinic). Once we call them and set up an appointment, it will take about a month.”
Exactly when they will make that call depends largely on how well the fundraising efforts go. The family has held several fundraising barbeques in Arborg this summer, and has sold tickets to a dinner at CanadInns earlier this month. They have a pancake breakfast planned for Oct. 15 at the St. Nicholas Parish Hall at the Arborg& District Heritage Village. As well, they have set up trust accounts for public donations at the credit union and bank in Arborg, and accept PayPal on-line at www.miracleformanami.com.
