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!
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
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
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
The alarm goes off at 7:20am. I have 10 minutes before my three year old needs her medicine. I hate waking her up for meds, I wish she could sleep as long as she needs. Before I can dwell on this I hear my 10 month old son start to cry, time to get up.… Continue reading I Hope He Knows
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
Nothing can hold this girl back! We recently had our quarterly check up at the renal clinic and Elsie is doing well and growing like a weed. She is now in the 24th percentile for weight and 31st percentile for height which is just so amazing to hear. Take that cystinosis! Right around this time… Continue reading She Just Keeps Growing!
Tonight the cystinosis community is paying tribute to three young adults who passed away this past week with a worldwide candle lighting ceremony. We've only been a part of this community for about two years but more losses have been felt than I expected for such a rare disease. Although I have not known any… Continue reading A Loving Tribute