Author: Amanda

Amanda is a mother to two beautiful children and began writing, after her daughter was diagnosed with the rare disease, cystinosis. She started the blog Elsinosis: Living with Cystinosis to chronicle their story, advocate for her daughter and help other families in similar situations look for their silver linings. You can follow their story at www.elsinosis.com
Early Years, Fun Stuff, Lifestyle

My Listen To Your Mother Experience

Amanda

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, Lifestyle

Tips For Keeping Your Child Cool in the Heat

Amanda

A lot of people with cystinosis struggle with thermoregulation; the ability to regulate body temperature. The cause of this is not entirely known. As with most symptoms related to cystinosis, some people experience them and others don't. A lot of parents have noted that their child doesn't seem able to sweat, while others state that… Continue reading Tips For Keeping Your Child Cool in the Heat

Early Years, Fun Stuff

Help Layla’s Wish Come True

Amanda

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

Amanda

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

Amanda

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

Amanda

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

Amanda

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