2018 Christmas Card & Letter
We hope your Christmas season was filled with many blessings. We sent out 250 Christmas cards this year, but we could have easily sent...
One Billion Stories: Rare Sisters
We have had the honor and priveledge to work with some very special and talented people who have offered to help us tell our story, and...
Basement Update: Help wanted
The Fries part of the basement is coming along! We are on to the fun part of flooring and trim, then onto storage shelves and installing...
NIH Day 5: Wraping it up
Today was the last day of testing for the girls. Cecilia had Neuro-Cognitive testing first thing this morning. This was definitely a...
NIH Day 4
Lilly had her sedated procedures today. She was not happy about it at all. She had to be fasting, and cried basically from the time she...
NIH Day 3
It was busy today. Both girls had several appointments at various departments. Cecilia had her swallow study and speech evaluation,...
NIH Day 2: Sedation, Speech, and a Seizure
Today was a lot. It was intense, and things became very real for us. I’ll start with Cecilia. She had her sedation procedures today. ...
NIH Research Week: Day 1
Yesterday, Jon, Cecilia, Lilly and I arrived at the National Institues of Health in Bethesda, MD. We are here to help medical...
An (overdue) Update
Please forgive the extreme tardiness of this update. We've been busy busy busy. Busier than I'd like, but I'll take it over the other...
Rare Sisters Day | Fairplay, CO Fundraiser
Dear Fairplay, There are simply not enough words to thank you for your tremendous generosity, love and support for Rare Sisters Day. You...
