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!
Lately I've thinking about how my life has been clearly divided between life before cystinosis and life after. This feeling is never more apparent than when I'm looking back at old photographs of Elsie. Although she's had cystinosis all of her life we didn't know about it until she was 15 months old. That's 15 months we had of… Continue reading Looking Back
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
At the end of this last year in November we were fortunate enough to have an appointment with a biochemical disease doctor, Dr Galina Nesterova, who just so happens to have a lot of experience treating people with cystinosis. It was so amazing to finally be able to talk with an expert in the field… Continue reading The Year Ahead
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!
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
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
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