Curled up in the corner of the leather sofa in her mom’s South Arm home, Shaneel Singh is trying her best to keep her emotions in check.
When asked, however, how she felt about the wave of support rolling in for her since she went public with her 11-year fight with debilitating multiple sclerosis (MS), the normally reserved 36-year-old struggles to hold it together.
People that she’s never met before and former elementary school friends that she’s not even seen for 24 years are among the 300-plus donations and messages of support pouring into her GoFundMe campaign.
“It makes me feel so loved; I’m so surprised to see it,” said Singh, wrapping her hands tightly around the cuffs of her hoodie, so she can wipe away the tears now escaping down both of her cheeks.
Singh, who hasn’t been able to work since 2007 because of her worsening condition, wants to say more about her supporters, but her words are being drowned out by the raw sentiment flowing from her eyes.
“There are people coming out of the woodwork from all over to make donations, it’s quite something,” said Shaneel’s husband, Aaron Valera, now stepping in to speak for his wife.
“It’s given her mental strength and optimism. For a long time, we were looking for answers and finally, we’ve found something that might work.
“She was starting to lose hope and I was begging her to keep fighting. It wasn’t until this year that I think she hit rock bottom and maybe she realized, she can only go up the way.
“We’re very private people; so this is a lot for us to put our lives out there.”
The answer Valera speaks of is an apparently ground-breaking, holistic program developed to treat MS.
However, it’s still being trialed in Canada and Singh is having to travel to Mexico at the end of June for the month-long therapy, which could cost up to $250,000, hence the GoFundMe campaign — which has raised almost $64,000 — and a fundraiser on June 24 at the Buck & Ear pub in Steveston.
According to Valera, the first phase of the Baja MedGate Program in Mexico treats CCSVI (chronic cerebral spinal venous insufficiency); which involves an angioplasty of the neck veins.
“It’s all connected to the central nervous system and the brain; if the veins are blocked, it prevents the blood from flowing properly,” said Valera, who has studied intently the program’s reputation around the world. “There’s a link between this and MS.”
The second phase involves stem cell therapy, with the trick being that, unlike many such treatments, there’s no chemotherapy element to it.
“It involves mesenchymal stem cells; given intravenously and via a spinal tap,” added Valera.
According to Valera, there is an 80 per cent success rate for patients, with little or no risk attached. Acknowledging the kind of treatment Singh is trying, the MS Society of Canada makes reference to the research in this country, noting that the federal government is still funding clinical trials and is keeping MS sufferers up to date on the progress.
Opinion among some experts, according to the society’s website, remains divided on the benefits of the treatment.
Singh’s condition has accelerated so much in the last few months, that, she’s had to move out of her home near Granville and Railway avenues and live full-time with her parents in Swansea Drive, near Williams and No. 4 roads.
And, as much as she’s grateful to be in a position to help during difficult times, Manju Singh admits it’s painful to watch her daughter suffer almost every hour of every day.
Before being diagnosed just before her 25th birthday, Shaneel worked as a teller at Coast Capital in Broadmoor, but quit that job in March of 2005, due to her condition.
She later managed to hold down a job as a receptionist with Canada Border Services.
“She’s getting more fatigued and it takes a long time to recover,” said Manju.
“She gets up very late, (around 11 a.m.) then someone has to help her brush her teeth; she has breakfast, which makes her tired; she has another nap but usually struggles to come for her lunch.
“After lunch, she takes another nap, watches TV, sometimes does a little stretching for some exercise. That’s about as much as she can do.”
Shaneel still dreams of having children one day, said her mom, but is scared.
“She’s able to right now, if she wanted to; but there’s always the fear of her taking a fall when pregnant. She has fallen a few times, so she’s scared to have a child.”
Manju is retiring this week. Her decision due, in part, to looking after Shaneel.
“The stress has affected all of our lives. The worst that can happen to any parent is to see your child suffering,” said Manju.
“I have to find strength every day to take care of my family and there are times I just sit there and stare at nothing. It has affected our social lives and our retirement. I’m actually housebound now, as well.
“Shaneel sees this and keeps saying ‘sorry, mom, sorry.’ I’m sure she’s very aware, but we don’t talk about it.
“We all want to be strong for her and I always tell her not to worry.”
As it stands, Valera has no tricks up his sleeve to bridge the funding gap between the near $64,000 raised thus far and the approximate $250,000 needed for the program and the post-therapy treatment and medication back in Canada.
“We’re trying to reach out to any and all avenues,” said Valera, adding that he might have to get another line of credit.
“(Shaneel) has lost so much already; we have to give it a try.”
The Richmond-based WAMS (Walk A Myelin Our Shoes Foundation), founded by Richmond MS sufferer Carmen deFoy, is hosting the fundraiser at the Buck & Ear pub in Steveston on June 24, from 6 p.m.
DeFoy, herself, successfully went through a similar treatment to the one Shaneel hopes to receive.
If you’d like to donate to Shaneel’s GoFundMe campaign, go online to gofundme.com/shaneel.
