On the heels of Rare Disease Day (Feb 28), I offer this story. It’s a story of gratitude about two girls, 12 year-old Rachel and 9 year-old Janneke who live with a rare syndrome. The girls cannot say thanks, but in their own ways, foster a spirit of thanksgiving in their caregivers and family.
In late August 2018, our team of docs at Mac initiated the idea of a wish with the Children’s Wish Foundation of Canada. As many of you know, both Rachel and Janneke were born with significant medical and developmental needs that compromise their daily living. They were diagnosed with a rare disease, Chitayat-Hall Syndrome, that officially affects three families.
They are unable to walk, talk, or feed themselves, and these challenges both discourage and motivate our family’s desire to live with joy. The girls’ needs make travel extra complicated, so we often look for ways to create quality time at home. Adding to the desire to find something enjoyable, we also must consider their chronic pain issues due limited mobility.
It’s now February, and there’s a jacuzzi in our backyard. The blessing of a jacuzzi is twofold: it allows our family to enjoy time at home together, and it also serves to soothe the physical pain, as the water and jets relax their tightened muscles. Together - the Children’s Wish Foundation of Canada and Jacuzzi Ontario (Ancaster), with help from Blue Spruce Homes for the cement pad and Floyd Elzinga for the lift system - this wish was granted.
So, here’s our public thank you. Two small words with incredible depth (and it is a deep tub!). We cannot be certain of how much time we will have with our girls, but we can be certain the days will be filled with good and waterful memories.