Silent auction seeks to turn tide on Williams Syndrome

Alma Loken walks with the assistance of her walker. Alma was born with Williams Syndrome and her nana Sally Marshall of Little Current is assisting her daughter Melanie Loken in raising funds for the Canadian Association for Williams Syndrome.

LITTLE CURRENT—Children born with Williams Syndrome face a host of medical challenges, including cardiovascular disease, developmental delays and learning disabilities, but nana Sally Marshall will tell you that her granddaughter Alma Loken is blessed with a winning smile and a loving disposition that is undaunted by any physical setback.

“Alma’s care team includes 22 amazing specialists, doctors and therapists that work together with us to help make Alma’s life better,” said Alma’s mother Melanie (Cote) Loken, formerly of Little Current. Each year Ms. Loken hosts an online silent auction that seeks to raise funds for the Canadian Association for Williams Syndrome.

Last year Ms. Loken’s efforts raised $15,000 for the Williams Syndrome workshop at Toronto’s Sick Kids (formally known as Sick Children’s Hospital). “The day was a huge success and helped more than 150 family members from across Canada, teachers, therapists and individuals living with Williams Syndrome connect and learn from speakers from across Canada and the US,” she explains.

“This year I am raising money to create the first international gathering for Williams Syndrome researchers and professionals here in Toronto in 2017 to help ensure every child with Williams Syndrome in Canada lives a long and healthy life and reaches his or her full potential,” said Ms. Loken of this year’s campaign. “Last year’s auction garnered 15,000 views in three days and included great brands like Dyson, Kitchenaid, Stokke and more. This year’s is shaping up to be bigger and better.”

“She is such a little sweetheart,” said Ms. Marshall of her granddaughter Alma. “She is so loving and determined.”

Alma’s birth was a miracle for her mother, whose odyssey to become a parent, and the three years of challenges that followed, can be read in ‘Williams Syndrome Wednesdays’ by following the link to Ms. Loken’s blog invitroveritas.wordpress.com on the mommydo.ca webpage. There you can learn of Ms. Loken and her husband’s efforts to conceive, their realization that it might never happen, the joy they felt when she finally became pregnant and the devastating blow that fell three months later when they learned of Alma’s condition.

“After 28 cycles of BFN (big fat negative, a common pregnancy test acronym), I need to try and figure out what I’ll do if it never happens. I do. But I’m not ready for that. If (it) had worked the first month, one of those ‘oh my god! We were barely even trying and here we are pregnant and isn’t that great’ stories,’ we’d have a 17-month-old baby. Walking. Talking. Instead I get to be the one friends trying to get pregnant avoid, maybe it’s contagious, this infertility,” reads a sample from her first entry. “I get to be the one cornered at parties gently trying to explain why we don’t have kids yet and that no, I don’t really want to talk about it. I’m the one counting days 26, 27, 28, no. 1, 2, 3…26, 27, 28 no. Over and over again. 28 days, 28 months. That’s 784 days plus 3. So next month we’re moving on to IVF. It’s our last if. If we have any chance, this is it. If this doesn’t work, well…we’ll cross that bridge when we come to it. Should you come across this blog while you’re going through the same thing, I hope you find comfort in my ramblings.”

Ms. Loken’s story is compelling and heartfelt, yet even through the tragedy and setbacks, the rollercoaster ride of victory and the impact of learning of her daughter’s condition, Ms. Loken’s story is also one of triumph and the joy of victories.

To learn more of her amazing story and to make a donation, contact Sally Marshall at 705-968-0302.