Erin Smith’s symptoms crept up on her. Family and friends noticed something was amiss with the young woman in her mid-thirties, who was normally in good health. But it was hard to pin down exactly what it was.
“It was really a collection of little things at first, and I didn’t give it too much thought,” Erin Smith explains from her dining room table in Bella Coola. “I kept thinking it would get better, but it just didn’t.”
Erin Smith is now eight months pregnant and facing the fight of her life. Diagnosed with primary progressive multiple sclerosis (PPMS) in November 2014, together with her husband Ben, their lives have essentially been turned upside down.
“I have always been a healthy person,” Erin said. “There is no cure for PPMS and it’s aggressive, so it’s a very, very scary diagnosis.”
PPMS is a rare form of multiple sclerosis – only about 10 percent of MS patients are diagnosed with it. Unlike typical relapsing remitting MS, PPMS is characterized by a lack of remissions. Patient’s symptoms simply get worse and worse, and drug therapies aimed at “normal” remitting MS are ineffective at slowing the progression or alleviating symptoms.
“In Canada, it’s basically not treated,” Erin explains. “It’s such a rare form that most MS research and subsequent treatments are not focused on PPMS.
PPMS sufferers slowly lose their basic functions as the disease attacks myelin (a protective layer which covers the nerves in the brain and spinal cord), and eventually leads to complete paralysis.
Erin now finds simple everyday tasks using fine motor skills, such as using a knife, brushing her teeth or writing her name, are much more difficult or simply impossible. Her speech has slowed and her movements are more spastic, and unpredictable. Thankfully, her condition will not affect her pregnancy and their baby is due to be born at the beginning at of December.
“We were told long before Erin’s diagnosis that we would never be able to have children,” said her husband Ben. “So the pregnancy was a huge surprise, we feel incredibly lucky and are really looking forward to it.”
After receiving the devastating diagnosis, Erin and Ben began conducting their own research into possible treatments. There are varying treatments for PPMS, although none are offered in Canada or the U.S. After many hours spent searching, they concluded their best shot at halting the disease lay in a treatment known as Hematopoietic Stem Cell Transplantation (HSCT).
Explained in layman’s terms, the treatment removes stem cells from Erin’s own peripheral blood and puts them through a process that essentially “scrubs” the PPMS from her stem cells. She will then be put through four grueling rounds of chemotherapy back-to-back to “reset” her immune system.
Following the chemo her own stem cells, now “clean” of PPMS, will be transplanted back into her body. As PPMS is an autoimmune disorder, it is hoped that the transplanted stem cells will become the new “bosses” of her immune system, and the progression of the disease will be halted. The whole process is estimated to take between four to eight weeks.
The couple said that various PPMS sufferers in online forums have reported very positive results following the procedure. While the treatment is essentially intended to halt the progression of the disease and offers no guarantee that symptoms will reverse, some patients have reported that their symptoms have lessened following the procedure.
“It’s giving me hope that in the future I can be here and be a mother, otherwise it was very hopeless,” Erin said. “Right now we are just hoping the symptoms will stop worsening, and any reversal of symptoms would be a bonus.”
However, the financial cost of the procedure, $54,500 USD, is simply too much for the couple to bear. Erin worked as a Special Education Teacher and is now on disability; Ben is a Youth Care Worker at Bella Coola Elementary.
“It’s hard to ask for help,” Ben said. “But people here have made it easy, they’ve been so amazing. We are absolutely overwhelmed with the community’s willingness to help.”
Ben initially created a donation site under YouCaring.com and shared it on the Valley’s Facebook site – Belco Bulletin Board. The community response was swift. So far, the online forum on YouCaring has raised over $12,000.
Community events include a Legion Dinner/Pub Quiz planned for Saturday, October 24. There will also be prizes for the Pub Quiz, a 50/50 raffle, and toonie-loonie draws. Tickets are $25 and part of the proceeds will go to Erin’s treatment.
In addition, a Halloween Dance featuring AKA will be held on Saturday, October 30 at Lobelco Hall. Tickets are $25 and include appetizers and a raffle for prizes. Tickets are available at Koopas, Mountain Valley Organics, Dragonfly Studios, Little Nook and Shop Easy. There is an account at the WLDCU under “Erin’s Medical Fund” for local donations, and finally, Ben’s hometown of Aberdeen, Scotland is holding a traditional “Ceilidh” – a dance and fundraiser.
Erin plans to leave for her hometown of Golden, BC, in November to have the baby. Following the baby’s arrival, Erin’s HSCT is scheduled to begin next April in Mexico, the nearest country to offer it to people with PPMS.
“We are so grateful, we never imagined we’d get help like this. We couldn’t have done it on our own” said Ben.
Erin agrees. “We really want the community to know how grateful we are, and we really want everyone to have fun at the Halloween Dance. It’s going to be a good time.”
For more information or to donate, visit Erin’s YouCaring site at www.youcaring.com/erin-smith.