TORONTO -- Freedom flickered so elusively close, with a joyous new wiggle of her toes, with the thrilling turning of her head.
For Alda Byers, imprisoned by a rare, paralyzing brain stem stroke, a controversial stem-cell treatment in Mexico last fall seemed to deliver on its promise of improvement.
But now all her progress has come to an abrupt end and her family believes it’s Canadian medical reticence that is standing in her way.
The pretty 52-year-old remains trapped in her hospital bed at West Park, her world confined by walls brightly decorated with loving cards and dozens upon dozens of photos of her family, friends and beloved dog.
Byers was once the witty, energetic executive assistant to Richard Peddie, CEO of Maple Leaf Sports and Entertainment, the go-to girl who could get anything done by simply picking up the phone.
That all ended without warning on one July morning in 2006. The once-vibrant, healthy mother of two was found collapsed on the floor of her bathroom six hours after suffering a massive stroke.
She’s been locked in her frozen body ever since, with the blinking of her blue eyes her only means of communication.
When we first told her story last summer, her devoted husband Robert had refused to give up on finding a cure.
With the help of hundreds of friends, they held two fundraisers and put together the thousands of dollars they needed to get her a stem-cell transplant last September in Cancun.
At first, the results were astounding.
She could suddenly move her neck from side to side. She could open her mouth and form an “O”. She could wiggle her toes and fingers. She could laugh and even breathe on her own for short spells. For someone who couldn’t move at all, it was a breathtaking promise of what lay ahead.
Soon after arriving back at West Park, with Byers happily demonstrating her new tricks for all her visitors, they received a follow-up e-mail from her Mexican doctor: to continue the stem cells’ work, she’d need to take a cocktail of drugs for the next six-to-eight weeks.
They never anticipated any problem with a Toronto doctor writing the prescription. The three drugs — erythropoeitin, filgastrim and somatotropin — are not rare or experimental. The first two are generally used for anemia, renal failure and chemotherapy, the third has been used in children and athletes as a growth hormone.
Yet they’ve hit a roadblock at every turn. Since October, they’ve approached numerous doctors and specialists through their many contacts and all have turned them down. There is no provision from the Canadian Medical Association preventing physicians from prescribing medication “off label” — for a condition not originally intended for the drug.
But all the doctors they’ve contacted have expressed reluctance because Byers’ stem-cell treatment is highly experimental and they don’t have experience treating someone who has undergone the procedure, which is still considered quackery by many in the scientific community.
Her desperate husband has told them he’s willing to sign whatever waiver they need so they aren’t legally responsible for any complications. He’s offered to pay for the medications out of his own pocket.
But still no doctor will step forward.
“It’s like hitting your head against the wall,” says Byers, 60, waving a thick file of e-mails from physicians turning them down.
“Everybody wants case studies,” he complains. “But somebody with a brain stem stroke is one in a million and how many of them have undergone stem cell treatment? None.”
In the meantime, his wife has watched with rising horror as her recovery stalled and then regressed. She can no longer move her feet or hands; she can no longer turn her head to the right. Hope has died and depression has taken hold of her once again.
“There was definite improvement here. Why someone wouldn’t want that to continue is beyond me,” insists Byers. “I guess they’re all afraid of malpractice suits.”
Their last chance is that a compassionate doctor reading of her plight will contact them through firstname.lastname@example.org and agree to assess her and prescribe the drugs.
After all, there is no complication that could be worse than what she is living right now.
“When Alda came back we were all so excited,” her husband says, stroking her forehead.
And as she watches him, her blue eyes spill unspoken words of unbearable defeat. It’s as if someone dangled the key of hope before her and then cruelly snatched it away.
Leaving her locked-in for good.
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