Debra Weidner dreams of a day when she can go skiing with her husband, Paul, and 10-year-old daughter, Zoë. She longs to go on weekend hikes or have family nights at the bowling alley.
Those are her dreams. She’d settle for just being able to walk from her kitchen to her laundry room without difficulty.
Over the past decade, multiple sclerosis has robbed Debra of many of the things she dreams of doing. Fatigue makes it difficult to do more than one thing per day, whether it’s laundry or making dinner. She sleeps 10 to 12 hours each night and takes a two- to three-hour nap every day, yet she never feels rested. The right side of her body has slowly gotten weaker, and foot-drop has left her reliant on a cane. Falls have become a common occurrence.
“I find it difficult to imagine where I’ll be five, 10, 20-plus years from now,” Debra said. “Truthfully, I don’t want to watch my life slowly deteriorate.”
So in March, Debra, 51, will pack her bags and head to Puebla, Mexico, to undergo a treatment for MS that is considered experimental in the U.S. The Camas woman will spend 28 days in Puebla, receiving treatment at Clinica Ruiz with her mother-in-law, Karen Fitzsimons, serving as her caregiver.
The goal is to stop the progression of her disease.
“My bare minimum (goal) is that I never get any worse than I am right now,” Debra said.
Stem cell therapy
Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord. MS is caused by damage to the protective covering that surrounds nerve cells. The nerve damage is caused by inflammation from the body’s immune cells attacking its nervous system.
Debra will undergo a stem cell therapy called hematopoietic stem cell transplant, or HSCT. According to the National Multiple Sclerosis Society, HSCT has been explored for many years in MS and has been used more than any other cell therapy approach for MS. But MS experts said that additional studies need to be performed in order to fully understand benefits and risks of HSCT and who might benefit most from the therapy, according to the MS Society.
Although it’s considered experimental in the U.S., the therapy is offered for MS patients in several other countries, including Mexico, Russia and India.
HSCT is a procedure that tries to reboot the immune system of people with MS. Upon arriving in Mexico, Debra will begin a course of medication to boost production of her stem cells, which will then be harvested. Next, Debra will receive four days of chemotherapy, which is designed to wipe out her T cells and her body’s memory of MS.
After the chemotherapy, Debra’s stem cells will be returned to her body and will work to build up her white blood cell count. When her cell count is high enough, she’ll be released to return home, where she will need five doses of a drug used to treat autoimmune diseases, called Rituxan, over 10 months.
The new stem cells will, over time, produce new cells that eventually establish an immune system that is less likely to attack the central nervous system, therefore halting the progression of MS.
Debra will spend the year following her treatment in recovery. She’ll have dietary and lifestyle restrictions to prevent her from getting sick and, eventually, she’ll need to receive all of her childhood immunizations again.
Debra’s treatment comes with a price tag of $55,000. She started a GoFundMe page, www.gofundme.com/debraweidner, to help cover the cost of the therapy. So far, she’s raised about $13,000.
Diagnosed at 30
Debra had her first MS episode not long after her 30th birthday. The left side of her body went numb from the waist down. Her chiropractor told her she didn’t need an adjustment, she needed a neurologist. The neurologist diagnosed her with MS.
Over the next decade, Debra experienced relapsing-remitting MS. She had periods of symptoms followed by periods of remission, when her symptoms disappeared.
But that all changed after Zoë was born. Debra’s symptoms went into remission during pregnancy and while she was breastfeeding. But when Zoë was about 1 year old, Debra traveled to Arizona for a week to visit family.
“She came home and she was different,” Paul said. “She came back a different person than when she left. She never recovered.”
Debra’s symptoms became more constant, the remissions less frequent. She grew more fatigued and her body slowly started getting weaker.
Debra tried various medications while she had relapsing-remitting MS. The drugs, however, last only for a while before the disease becomes stronger than the medication.
“All the drugs they have are, in my opinion, Band-Aids,” Debra said. “There is no cure. There’s no stopping it. It’s just prolonging it until the MS breaks through.”
And once a person reaches secondary progressive MS, as Debra has, the drugs are no longer effective. That’s why Debra and her family have turned to HSCT.
Studies have shown the therapy can stop the progression of the disease. Some people even experience some recovery of their disabilities. While Debra hopes to recover some of what she’s lost, just stopping the progression of the disease would be life-changing.
“This is the first thing that has given me hope in a long time,” Debra said.
That hope, as well as Debra’s previous health battles, have erased any apprehension Debra had about undergoing treatment. In 2013, Debra was diagnosed with breast cancer and underwent a double-mastectomy.
“If I can get through that, I can do anything,” Debra said.
“This is to gain something,” Paul said. “Everything else was to keep from losing everything. This is hope.”
