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
That beautiful girl in the poster is Abbi, a fun loving soon to be 9 year old living with cystinosis. April 13th is her birthday and to celebrate for the past few years her school has done Sunglass Day, where kids could wear their sunglasses to school in honour of Abbi for a small donation,… Continue reading Cystinosis Sunglass Day
This past week Elsie became a big sister to her little brother Linden. Linden came early and unexpectedly (born at 36 1/2 weeks) but he is doing well and we are all so in love with him. Above is a picture of Elsie meeting him for the first time. The way she is with… Continue reading Welcome Baby Linden
I love photos, especially family photos. I am probably one of those parents you see at the playground taking a million pictures of their kid with their phone and you think to yourself "why can't they just enjoy the moment?" But I can't help myself, to me Elsie is the most adorable thing on the… Continue reading Our Tiny Light
Dave and I are super excited to say that we are expecting our second child in April 2015! After months of agonizing over trying to have another baby or not (see my One in Four post) our decision was simply made for us. I don't want to freak anybody out who is currently using this… Continue reading We’re Expecting!
Recently I finished reading the excellent book Roller Skating with Rickets by Jessica Jondle, a woman in her thirties living with cystinosis. It recounts her life with the disease, her struggles, many accomplishments and unwavering determination to not let cystinosis define who she is or what she can do. As soon as I heard about this book… Continue reading Roller Skating with Rickets
My little girl is now 2 years old! I can't believe how fast time is going, it feels like only yesterday Dave and I found out we were pregnant. I still remember the fear I felt on our first car ride home from the hospital. Does everyone in this city drive like a lunatic? Don't… Continue reading She’s 2!
This Mother's Day we wanted to do something really special for Elsie's grandmas because they have been two of the most amazingly supportive, understanding and loving women not only throughout Dave and I's lives but also through this period of transition as we adjust to life with cystinosis. Although a gift can never really honour… Continue reading Step Up
This video was played during the Night of a Thousands Star's celebration last Saturday night. It was the perfect way to end the weekend Day of Hope conference put on by the Cystinosis Research Foundation and our family is so happy that we were able to be a part of it. Right away when Elsie was diagnosed… Continue reading The CRF Day of Hope Conference
This is the Christmas e-card I sent out to all of our friends and relatives and I just had to share it on here because her face is priceless! Usually she loves everyone that gives her attention and can charm the pants off of almost anyone but for some reason she is not a fan… Continue reading Happy Holidays!