Page 8 of 9
February 26, 2015 9:41 pm
2We left the house at 5:30a this morning and headed to the hospital. Ava, Oskar and Lucy were scheduled to be scoped. It is exhausting going through this...
February 24, 2015 9:50 pm
1Children with rare diseases get a unique opportunity to stand with players before game By Amy Donaldson, Deseret News Published: Tuesday, Feb. 24 2015 11:20 a.m. MST Updated:...
February 24, 2015 9:25 pm
1This past Monday night was a dream come true for me. Justin and I wanted to give the gift of the Utah Jazz to our Utah Rare families....
February 21, 2015 11:20 pm
1Today. I really feel the pain in my hands. I put off going to the grocery store for a few days. I was dreading the errand. I usually...
February 12, 2015 9:31 pm
1This was the email I opened this morning from one of my specialists: “Thank you for the updates — how are you doing today? I do not think...
February 6, 2015 1:52 am
3Yesterday was an interesting and exhausting day. As you may remember, we were not able to get whole genome sequencing approved through our insurance company for all five...
February 6, 2015 12:06 am
1As I sit and wait for our geneticist and our genetic counselor to enter the room, I am sick to my stomach. There are so many thoughts going...
January 31, 2015 7:42 pm
1Dear Family and Friends, I started RUN for my three undiagnosed children. So, I apologize for blogging on it about myself lately. I want to share my journey...
January 17, 2015 6:30 pm
1Today I am flying on an airplane with Justin for a corporate trip. It is an opportunity of a lifetime! And, I feel truly blessed to be included....
January 9, 2015 5:09 pm
1I am now officially very scared. My team of doctors have admitted that they do not know what is happening right now. They called me “a puzzle” yesterday....