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 if there was a book out there that followed a day in the life of someone with cystinosis. In my mind I was thinking about a book that would follow a few people in different stages of their lives but Amanda had a better idea, a collection of stories from people in different stages of their lives.
In this collection are stories from people who live all over the world, some live with cystinosis, some are parents, grandparents, siblings, relatives, the effects of cystinosis are not felt just by those who deal with it directly and I’m so proud to say that this collection shines a light on that. It also shines a light on the incredible strength and resilience of so many in the cystinosis community. I believe that we are absolutely better and stronger together and to me this collection is a testament to that.
It’s been over a year in the making and all I can do is give my ever lasting gratitude to everyone that has contributed and helped Amanda and I along the way. And I have to give an especially huge thank you to Amanda Leigh herself for taking on this endeavour with me despite her own busy schedule. I could never have done this on my own!
All proceeds go directly to the Cystinosis Research Network.
I hope that people will enjoy this collection as much as I do and that it will help spread awareness for cystinosis. So without further ado click the link below to get your copy of Strength: Lives Touched by Cystinosis today!
2 thoughts on “Strength: Lives Touched by Cystinosis is here!”
Hi there, I’m so sad to only just see your blog. I also live with Cystinosis.
Hi Joe, so sorry I didn’t write back to you sooner, I meant to and totally forgot! There’s a couple other cystinosis related blogs that I have found. If you’d like I can send you the links 🙂