Recent Posts
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Children’s genetic disorder baffles doctors
Link to video: Children’s genetic disorder baffles doctors Written by Heather Simonsen PARK CITY — A Park City mother and father are fighting for their children’s lives. Their...
Jazz to Host 30 Rare Children at Tonight’s Game (2/23/2015)
RUN wanted to give the gift of the Jazz in support of the Utah Rare events later this week! Thanks to the Jazz player donation program, we were...
Connecting with other rare families for Utah Rare!
The rare community is amazing! I have had the honor of working on the Executive Committee for Utah Rare. Check out UtahRare.org 🙂 The group of people putting...
Hands. They are really important when raising three young children.
Today. 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...
Rare Disease Day in Utah is February 28, 2015!
Megan, Katie and Lucy celebrate! It’s official! February 28th, 2015 is Rare Disease Day in Utah!
Hard drive arrived today!
The hard drive arrived today from our whole exome sequencing! I have waited over a year for this moment! Thank you to my team in Wisconsin!! You are...
Carcinoid is still an option but insurance company is denying requested tests?!?!
This 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...
Update on Harlie Valdez. She is still at Primary Children’s Hospital
I visited Harlie and Stephanie yesterday. I am so very concerned for Harlie. I brought her a few fun things to do to take her mind of off...
Quint Analysis Results are in. “First step” in a new journey…whole exome sequencing.
Yesterday 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...
Waiting for the meeting to start.
As 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...