Elsinosis: Living with Cystinosis
A real life account of beautiful Elsie and how she lives with cystinosis
Cystinosis is life changing. I've written multiple posts detailing all the ways in which cystinosis completely threw our lives for a loop and there's no denying that it leaves its mark on everyone involved. After the initial shock and general craziness of those first early years started to even out, the idea that I might… Continue reading Supportive Tattoos for Cystinosis
First off I am so, so sorry that it's been over a year and a half since I last posted anything! I had all these plans for regular updates but then I went back to work full time and with parenting two children and general life things this fell by the wayside and I'm sorry… Continue reading It’s Alright
I can't believe that this moment is finally here but it really is! The book that Amanda Leigh (author of Scarred, My Heart is Yours) and I have been working on, Strength: Lives Touched by Cystinosis is available now. It started as an idea I put out in one of the cystinosis support groups on Facebook, wondering… Continue reading Strength: Lives Touched by Cystinosis is here!
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
Elsinosis: Living with Cystinosis 