Life on a timer: Alaska family heading to Mexico for experimental treatment
It's a typical Sunday morning at Eric and Jeanette Guzman's South Anchorage home.
"I was really hoping it was sunny," Jeanette said while slicing avocados to pair with eggs, turkey bacon and English muffins for breakfast.
While Jeanette and Eric laugh and cook together, their son Alek plays games on his iPad.
A collection of medicine bottles yield a handful of pills 27-year-old Jeanette must take with her morning meal.
"This one prevents the seizures," she explains, counting out eight pills to swallow and a ninth that dissolves.
Today is a good day. It's something the Guzman family knows to appreciate because they've had their share of bad days.
"I don't like talking about what I have," Jeanette said, recounting the day she finally told Eric, just before they started dating.
They're reminded that they've now been married eight years, according to Alek, who takes his job of helping his mother remember things seriously.
"One day, you wake up you're normal, and then the next it's, 'Oh, I have MS again,'" said Jeanette.
Multiple Sclerosis-- it's an unpredictable disease affecting the nervous system that prevents the brain from communicating properly with the body.
"It feels like I have no legs. I don't know how to work my brain with my legs. I don't know how to make it move," said Jeanette, describing a symptom she experiences on her worst days-- the days when her legs give out; she can't take Alek to school and Eric has to carry her.
She was diagnosed 10 years ago and has been on multiple medications since, but recent testing showed her MS is still progressing. So, in October, Jeanette and Eric will head to Mexico for Hematopoietic Stem Cell Transplantation (HSCT), an experimental treatment boasting an 80 percent success rate in halting the progression of MS.
An autologous stem cell transplant uses healthy blood stem cells from your own body to replace your diseased or damaged bone marrow. An autologous stem cell transplant is also called an autologous bone marrow transplant.
A recent study conducted in Chicago also found promising results:
"The study found that of the 55 patients undergoing HSCT it looked at only one relapse of MS had occurred a year after treatment versus 39 in the drug group taking other “disease modifying therapies”.
"We've reached out and talked to a lot of people who've had the treatment and some of them are going on past five years of no progression of MS," said Eric.
He said Jeanette's number of years living with diagnosed MS and her rate of progression meet the criteria for the treatment's best results. Unfortunately, their insurance will not cover the treatment. While HSCT is an FDA approved treatment for certain types of cancer, it's not yet approved for treating MS.
But Jeanette might not have time to wait.
"I was told when I was diagnosed with MS, my life is on a time frame. I could be regular and one day end up in a wheelchair, to bed bound, and that's it. You're done," said Jeanette.
The treatment will cost $54,500 and requires a months stay in Mexico, followed by a rigorous six-month recovery at home while her immune system rebuilds itself from scratch.
Through the support of friends, family, strangers, fundraisers and a GoFundMe page, they've already raised $34,218-- about 60 percent of what they need.
They don't know what tomorrow will bring, or how life will change following the procedure, but Eric, Jeanette and Alek are all hopeful.
After breakfast, they took a short walk with the dogs on a trail near their home. Jeanette, taking in Alaska's natural beauty, wants to stay out longer, but Eric convinces her to turn back as her walk slows and her legs grow fatigued.
Today is a good day.
So together, they'll keep moving forward one step at a time-- fighting through the bad days-- to give Jeanette the best chance at more tomorrows like today.
You can read more about the Guzman family's journey here.
Editors Note: The original article called it an analogous stem cell transplant. This terminology has been updated to an autologous stem cell transplant.
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