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, Lifestyle

Advice I Have For Parents New To Cystinosis

Shortly after Elsie was diagnosed with cystinosis I was lying awake in bed one night, my mind full of thoughts and me desperately trying to silence them, when an idea popped into my head. Maybe I should start a blog. I felt scared, alone and broken and hated the idea of anyone else feeling this… Continue reading Advice I Have For Parents New To Cystinosis

Lifestyle

We Should All Care About Rare

Last year I read this post from Taylor's Tale: Why I'm Still Fighting Rare Disease and was shocked by the staggering numbers of patients and issues involved with rare diseases. I have been wanting to do my own research and post something similar ever since and with Rare Disease Day coming up on February 29th… Continue reading We Should All Care About Rare

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

Lifestyle

My Daughter’s Disease is Not Useless Information

Recently a family in the cystinosis community made a shocking and upsetting discovery this past week in something that I'm assuming was meant to be a light hearted gift. We've all seen those bathroom books before, usually full of strange, little known facts meant to elicit a few chuckles. So when I saw a picture… Continue reading My Daughter’s Disease is Not Useless Information