For Ryan and Alicia Johnstone, there’s no greater heartbreak than being told there’s no cure for what ails their 5 year old son, Rylan.
Rylan suffers from a rare combination of medical disorders – autism, hypopituitarism, septo-optic hypoplasia and diabetic insipidis-he can’t see, has difficulty walking, and is stricken with periodic seizures. Canadian doctors say nothing can be done for Rylan, so his parents are taking matters into their own hands. The couple from Gibsons, BC is raising $45,000 to take Rylan to get stem cell treatments from Beike Biotech in China.
“They think he is a great candidate,” says Alicia, Rylan’s mother. “They told us they have a 90.1 percent success rate.”
In the world of medicine, stem cell treatments are the future. They are the building blocks of the body and could one day provide effective treatments for incurable medical conditions like Parkinson’s, ALS and even spinal cord injuries. The science is still in its infancy, with the treatments neither proven to be safe nor effective. Still, hundreds of clinics around the world are already offering stem cell treatments for a variety of medical conditions.
Rylan’s father is hoping, at the very least, the treatments will give his son partial vision.
“It almost sounds selfish, but one of my biggest things is I want him to be able to reach out and see and say daddy and be able to see who daddy is,” he says.
The clinics that offer these stem cell treatments are controversial. Researchers say the science is still in the very early stages of clinical testing, and has not been approved in Canada or the United States. Michael Rudnicki is the scientific director of Canada’s Stem Cell Network and he says these clinics are selling false hope.
“This is about making money. They are lining their own pockets on the grief of other people,” Rudnicki says. “These clinics are for the most part snake oil salesman and if it sounds too good to be true it probably is too good to be true.”
Those warnings haven’t stopped Ryan and Alicia Johnstone from deciding to take their son to China.
“I don’t want to be on my death bed and thinking what if? I want to put in my all, we’ve got nothing to lose,” Alicia says.
But an Ontario man is warning people like the Johnstones that there is more to lose than money.
Jerry suffers from chronic back pain and in 2008 it became so unbearable he went looking for relief.
“It’s a burning shooting pain and it’s like your nerves are telling your brain that everything is going wrong,” he says.
Jerry estimates he saw thirty doctors but none of them could figure out what was causing the pain. So when Dr. Dino Prato at the Envita Medical Center in Phoenix, Arizona suggested stem cell treatment Jerry went for it.
“It seemed very compelling. And even one patient that he mentioned sounded exactly like me,” he says. “It was a spinal injury patient who had nerve pain running down his legs, it was a ten out of ten, and after receiving stem cell treatment his pain was down to a two or a three.”
Jerry paid Envita $28,500 to shuttle him a few hours south to Puerto Penasco, Mexico. Over the course of five days, 50 million stem cells were injected into his spine. But far from improving his pain, when Jerry left, it was much worse.
“I was like, this is bad. This is getting really bad. I was getting scared, I was calling home,” he says. “I was telling my friends that something was happening to my body after I got this procedure done. I started feeling tingling in my hands and in my feet.”
Today, Jerry can’t work, takes a cocktail of pain medication and is forced to live at his parents’ home in Courtice, Ontario.
In a 16×9 investigation, Carolyn Jarvis brings you the story of those who will do anything for a cure and the doctors who have gotten into the business of “selling hope”.