HAYDEN, Idaho — A second chance at life?
Robin Bates is working on it.
"You never really know what you're in for when you start out on these journeys," Bates said Friday, seated in his motorized wheelchair in his living room. "I'm a really private person, and I've had to be completely transparent and talk to people about things I'd never talk about. It's like creating a whole new you."
For 23 years, Bates, 53, of Hayden, has lived with multiple sclerosis, a disease that affects the brain and spinal cord and causes vision loss, pain, fatigue and impaired coordination.
Nearly 1 million people in the United States are affected by MS, according to the National MS Society. Bates' condition has progressed to the point where he can no longer do simple tasks, like make his own meals or even lift the kettle off the stove without help from Paula, his caregiver and wife of 23 years, as reported by our news partners, the Coeur d'Alene Press.
"There's all these things I can't do," he said. "I'm like a 50-year-old baby. Honestly, I can do nothing."
Earlier this year, Bates launched an effort to undergo a procedure that would basically reset his immune system and repurpose cells or create new MS-free stem cells, allowing him to once again have control of his mobility and possibly even walk once again. If he does nothing, he may end up in an assisted care facility where he will be away from his wife and the life he loves.
"If I can get stem cells, I don't have to take drugs," he said. "Then they do the treatment and I don't need drugs ever again, in a perfect world."
These procedures come with a hefty price tag, and it has been a challenge for Bates to make arrangements because of the advanced level of his condition, especially in the United States. This particular operation, a hematopoietic stem cell transplant, is not approved or covered in the U.S. Bates has had to seek out facilities abroad after being denied or told "no" by U.S. doctors.
"This is America, we have all the best technologies," he said. "It's kind of annoying that the place that should be able to help you, save you, turns you down. I'm the sickest person you'll ever come across and really need this technology, and they give it to healthy people."
Through the frustrations and difficulties, Bates was pleased to report he is halfway to his $50,000 fundraising goal and he is in the final approval stage with stem cell facilities in Mexico and in South Africa, where he is originally from.
He has a few options regarding time and cost — $40,000 for a six-week treatment or $75,000 for a six-month treatment.
"The $40,000 place said they'll guarantee that my disease will not get worse," he said. "Six months, they'll guarantee that I'll walk out of there. If I had $75,000, I'd be there yesterday."
Bates said America does have one $25,000 option for him at facilities in Seattle and Florida, but the outcome would only halt progression for six months and would require expensive repeat procedures.
He has an online appointment with a doctor in Mexico today.
"I'm pretty confident, I think it's going to go well," Bates said.
He'll know in the next 30 to 40 days if he will be officially approved for a hematopoietic stem cell transplant. If not, he'll aim for the $75,000 procedure, even though it means he'll have to move to Cabo San Lucas for six months.
"How terrible could that be, living in paradise for six months?" he said with a grin.
Bates is optimistic about the process.
"From a physical standpoint, I have nothing, but from a mental standpoint I'm gung-ho, there's nothing that can get me down," he said. "Even on the worst days, I can take a terrible situation and find good in it. If you have a disease where you have no chance and you believe you've got no chance, you may as well just die. With me, I'm always optimistic, I always look for the good. No matter how terrible things are."
Contributions from friends, community members and strangers have also encouraged Bates, including a dear friend who offered to donate $5,000 if another $5,000 was donated. This resulted in $11,995 being raised in September.
Bates is eager to break free from MS and show others with the disease that there is hope. He is grateful to all who have supported him thus far and those who help in the future.
"Some people want to get better so they can get back to work," he said. "I want to get better so I can teach everyone with MS there's a way out of here. If you haven't got hope, what have you got?"
Info and updates: www.gofundme.com/f/stem-cell-transplant-to-stop-multiple-sclerosis.
The Coeur d'Alene Press is a KREM 2 news partner. For more from our partners, click here.
