Early Years, Fun Stuff

Strength: Lives Touched by Cystinosis Cover Reveal!

For about the past year and a half I've been working with Amanda Leigh, author of the books Scarred, My Heart is Yours and some great poetry collections, on an anthology of stories from the cystinosis community. We've collected stories from people all over the world whose lives have been affected in one way or another… Continue reading Strength: Lives Touched by Cystinosis Cover Reveal!

Early Years, Fun Stuff, Lifestyle

The Day of Hope Family Conference 2017

About a week and a half ago Elsie and I attended the Cystinosis Research Foundation's Day of Hope family conference and it was amazing! It's a yearly conference that the CRF holds in Newport Beach where families, doctors and researchers come together and get to know one another, share their wisdom, and learn about all of… Continue reading The Day of Hope Family Conference 2017

Early Years, Fun Stuff, Lifestyle

My Listen To Your Mother Experience

This post originally appeared on The Mighty I never had an interest in public speaking, in fact I avoided it as much as humanly possible. It always made me think of those times in high school when I had to present a project to the class. My heart beat so fast I could barely breathe… Continue reading My Listen To Your Mother Experience

Early Years, Fun Stuff

Help Layla’s Wish Come True

On Sunday July 10th, The Children's Wish Foundation is hosting the 5th Annual Princess and Pirates Tea Party, right here in the Lower Mainland! The Princess & Pirates Tea Party raises funds for wish granting and is also an opportunity for children to welcome a little magic into their lives and let their creativity run wild! It includes a… Continue reading Help Layla’s Wish Come True

Early Years, Fun Stuff

Beads of Courage and Bravery Buddies

As much as I try to shine a positive light on living with cystinosis and strive to treat Elsie like any other little girl, there is no denying that cystinosis can be heavy. She has a lot of responsibility pressing on her little shoulders and a lot of unpleasant experiences to endure. I've spent more than… Continue reading Beads of Courage and Bravery Buddies

Fun Stuff, Lifestyle

Listen To Your Mother

I am so super excited to announce that I will be reading a special essay on my somewhat unique perspective of motherhood at the very first Canadian production of Listen To Your Mother! The inaugural Listen To Your Mother Vancouver show will be taking place on Saturday April 30th at 7:30pm at St James Community Square in Kitsilano… Continue reading Listen To Your Mother

Early Years, Fun Stuff, Lifestyle

Dream, Achieve, Inspire

Every two years the Cystinosis Research Network holds a family conference where families can get together for a few days, attend the many information sessions by leading experts in cystinosis patient care and children, teens and adults alike can have some fun. Sadly we have not had a chance to attend one of these conferences… Continue reading Dream, Achieve, Inspire