In the simplest of terms, Tatiana Haas-Castro’s body just has the wrong idea. It means well, but it’s confused, and that confusion is killing her.
For 17 years, the Clayton resident has lived with multiple sclerosis, a progressive autoimmune disorder in which the body turns on its nervous system, eating away at the coatings of nerve endings.
Haas-Castro first suspected something was wrong when, on a walk, her foot fell asleep so randomly and so completely she had to drag it along beside her.
“When I got home, I looked up MS; I don’t know why,” she said. “I told my father, who was a doctor, my symptoms, and he recommended a neurologist in Fayetteville. They got me in 10 days later. They told me I was one of the lucky ones. Some people don’t get diagnosed for years, and it only begins to make sense in hindsight.”
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Now, at 50 years old, Haas-Castro has a wheelchair rack on the back of her van. She can’t run, her hands shake, and she keeps a collection of canes near her front door. She worked as a nurse until seven years ago, when her symptoms got so bad she had to go on disability.
A lot has happened to Haas-Castro in 17 years, but so much could still happen, she said. She could need that wheelchair permanently, and she could lose her independence.
But Haas-Castro is willing to fight for what she has left, and for her, that fight is in Mexico. Later this year, Haas-Castro will undergo a stem-cell transplant at Clinicia Ruiz in Puebla, Mexico, which lies between Mexico City and the Gulf. She’s not hoping for a cure; she just doesn’t want to get any worse.
“Bit by bit, ambulation got harder, then I started getting tired; when I’m at a stop sign, I put my car in park so if I fall asleep, I won’t hit them,” Haas-Castro said. “The main reason I’m doing this is to halt the progression. If I can halt it right now, I’m doable. I can drive and eat and take care of myself.”
In December, she’ll have stem cells taken from her bone marrow, have her immune system essentially turned off through chemotherapy, then have her stem cells put back into her body, where, she hopes, they’ll create a new immune system, one that doesn’t know anything about MS.
“They’ll have their memories scrubbed,” Haas-Castro said. “They won’t have any memory of me having MS or attacking my myelin sheath. It’s essentially rebooting my system.”
Similar treatment trials are under way in the United States and Canada, but with her advanced MS, Haas-Castro couldn’t get in. (The results here appear promising, though. With a small study of 24 Canadian and U.S. patients, 70 percent did not see symptoms worsen in three years, with some even regaining some functions.)
So Haas-Castro turned to the clinic in Mexico. She knows how it sounds, the idea of getting medical care in Mexico that’s not fully approved in the United States. She’ll acknowledge the desperation, but she’s done her due diligence.
“When people hear stem cells, they think baby; when they hear Mexico, they think some rinky-dink hospital,” Haas-Castro said. “My aunt lives two hours away from the clinic, so she went and checked it out. She said that if she had MS, she would definitely get treatment there.”
Because it’s risky, experimental and in Mexico, Haas-Castro will have to fund the transplant out of pocket, which the clinic’s website said is $54,500. She’s set up a Help Hope Live page, which raises money for medical expenses, and by the end of August, she had raised more than $37,000 toward her $60,000 goal. A dance fundraiser on Aug. 20 in Durham netted $9,300 alone.
“I’ve really got the village behind me,” Haas-Castro said. “It’s amazing what we can do when we come together as a village.”
As she was talking, Haas-Castro’s feet were numb and propped up in a recliner, one of her dependable refuges. She said she was tired from school shopping with her daughter but that these were the kinds of things she hopes to hold on to.
“I don’t want to end up in a wheelchair, and I’m heading that way,” she said.
The next fundraising event is Sept. 17, a yard sale at her house at 118 E. Blanche St., Clayton. A good crowd should be on hand; that’s the same date as Clayton’s Harvest Festival.
For more information, visit www.helphopelive.org and search for Tatiana Haas-Castro.