Cystinosis Supportive Tattoo By Phil Kwan
Fun Stuff, Lifestyle

Supportive Tattoos for 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

Early Years, Fun Stuff, Lifestyle

Strength: Lives Touched by Cystinosis is here!

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!

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, Lifestyle

Take Care of Yourself as Well!

I've been thinking about writing a post like this for a long time now, but have never felt like I've truly embraced it. Right when Elsie was diagnosed I knew that I would have to keep myself healthy and happy if I wanted to really take care of her properly. You hear all the time about how… Continue reading Take Care of Yourself as Well!

Early Years

When It’s More Than Just Picky Eating

I recently wrote an essay for Tribe Magazine titled,"The Heartbreak of a Picky Eater." In it I talk about how difficult it is to have a child that refuses to eat no matter how hard you try, and feeling judged by others for their skinny appearance. But what I didn't talk about is when it's more than… Continue reading When It’s More Than Just Picky Eating

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