Elsinosis: Living with Cystinosis
A real life account of beautiful Elsie and how she lives with cystinosis
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!
Oh no, the day has come that she's officially walking! Since she's been able to roll and crawl we've known that the day she started walking was going to be trouble. Unless the mesmerizing t.v. is on she is constantly moving, dancing and getting into trouble and now we're really in for it. It's so… Continue reading Everybody Look Out… She’s Walking!
One of the things that has made a huge difference for Dave and I when it comes to coping with Elsie's diagnosis is the overwhelming support that we've received from our friends and family. After being told that Elsie had Cystinosis we were a little hesitant to talk to anyone about it. She wasn't yet… Continue reading Finding Support
Elsinosis: Living with Cystinosis 