Nearly three years ago, Krystal Shipley was told by doctors to say goodbye to her two-month-old son, Ayzac.
“One day, he just went grey and limp and was struggling to breathe,” the South Surrey mom recalled of the day in September 2010. “We almost lost him in ICU.”
After two days on life support, Ayzac pulled through. But there were no answers as to what caused him to become so ill, so suddenly.
Five months later, the mother of three received results from a muscle biopsy confirming that her youngest child had a mitochondrial disease.The complex disease prevents the body from producing the energy it needs to sustain life, Shipley explained.
“Mitochondria are in every cell of the body, except our red-blood cells, and they produce the energy to sustain life. Without that energy, the organs don’t function properly, affecting skin, muscles, tissues – everything,” she said.
However, of the more than 140 known types of mitochondrial disease, Ayzac’s did not fit the criteria.
Then, one year ago, Treatable Intellectual Disability Endeavor (TIDE) B.C. approached Shipley, asking if Ayzac would take part in a research study called TIDEX. The care and research initiative – which is connected with BC Children’s Hospital – studied Shipley’s blood work, along with her now ex-husband’s and all three children – conducting genome sequencing in order to find out which gene was causing Ayzac’s condition.
Last October, Shipley finally received an answer to what was causing her son’s illness. The discovery of the RMND1 gene also made Ayzac the only known living child with that type of mitochondrial disease.
However, along with finding out the cause of the illness, Shipley was told that Ayzac’s condition is progressive and eventually fatal.
Rather than allow herself to fall apart, in the weeks following the diagnosis Shipley pulled herself together and focused on what she could do for Ayzac and for families who are in similar situations.
“I started thinking about going to nursing school. The more I was caring for Ayzac, the more I learned. He requires complex care, so I would have to do the injections, tube feeds, seizure monitoring and airway management. I thought, this is what I need to do, this is what I want to be,” she said. “I want to work with families like mine, so I can provide a kind of empathy to those in situations like mine.”
Shipley’s perseverance has not gone unnoticed.
In May, her mother, Lorna Faulkner, nominated the 28-year-old in the Walmart Mom of the Year contest.
The contest – now in its second year – aims to celebrate mothers across Canada. This year, more than 24,644 candidates were nominated.
Shipley is now in the top 20.
The winner will receive $100,000 to donate to the charity of her choice, a day of pampering in Toronto and a seat on next year’s selection committee, as well as $10,000 for herself.
Seven other finalists will receive $10,000 to donate, as well as $10,000 personally and a day of pampering in Toronto.
If Shipley takes the title, she aims to donate the funds to Canuck Place Children’s Hospice, which has been a huge source of support for herself and Ayzac.
“I can not say enough about Canuck Place Children’s Hospice,” she said. “It’s a big beautiful house in Shaughnessy in Vancouver, and he will also receive his end-of-life care there.
“It’s bittersweet for me. It’s such an amazing place that is there for you when you need it, but you hope to never need it.”
With an increasing number of families requiring the services of the hospice, Shipley said it is necessary to find the funds to support the hospice’s growth east to Abbotsford.
“The hospice in Abbotsford is going to make such an impact in so many peoples’ lives, including my own, and this donation would help make that happen,” she said.
The $10,000 for herself would also help provide a fitting tribute for her son when the time comes, she said.
Currently, there is a voting round taking place online until the end of July.
The mom with the most votes is guaranteed a spot in the top eight, with the rest being selected by the selection committee.
For more information, visit www.momoftheyear.ca