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!
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
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
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
A few weeks ago I was browsing Instagram and stumbled across the TinySuperheroes feed and immediately got that excited feeling I get when I see every day people doing beautiful things for warrior children. There was picture after picture of cute and adorable kids all in superhero capes and their enormous smiles said it all. As… Continue reading Tiny Superheroes
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
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
Before having children the holidays were never really that big of a deal to me. It was always nice to have those few days that our family got together to celebrate and I loved trying to find that perfect gift for them but holiday cheer and activities were never high on my priority list. However… Continue reading Holiday Giving
Nothing can hold this girl back! We recently had our quarterly check up at the renal clinic and Elsie is doing well and growing like a weed. She is now in the 24th percentile for weight and 31st percentile for height which is just so amazing to hear. Take that cystinosis! Right around this time… Continue reading She Just Keeps Growing!
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