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
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
With the New Year ringing in I had high hopes that this year would be our best year with cystinosis. We've been living with it now for just over 2 years, have had lots of time to research, ask questions, learn about what everyone else is doing and coming to terms with it ourselves.… Continue reading New Year, New Medicine
Before having children the holidays were never really that big of a deal to me. It was always nice to have those few days that our family got together to celebrate and I loved trying to find that perfect gift for them but holiday cheer and activities were never high on my priority list. However… Continue reading Holiday Giving
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
Not long ago cystinosis was most definitely a terminal disease. Even up until the early 90's parents whose children were just diagnosed were told their child would likely not live past 10 years old. But with the introduction of Cysteamine treatment (now a days Cystagon and Procysbi) people with cystinosis are living longer than ever!… Continue reading Is it Terminal?
Every two years the Cystinosis Research Network holds a family conference where families can get together for a few days, attend the many information sessions by leading experts in cystinosis patient care and children, teens and adults alike can have some fun. Sadly we have not had a chance to attend one of these conferences… Continue reading Dream, Achieve, Inspire