Search results for ‘Lucy’
Page 9 of 11
Utah Rare’s 2015 Rare Disease Day Symposium. Rare families. The heartbreaking stories from yesterday…
I felt honored to be a part of the Utah Rare’s 2015 Rare Disease Day Symposium. It will be a day that I will never forget. Not only...
Utah’s Rare Disease Inaugural Symposium: Speech by Gina and Justin
LIVING IN A DIAGNOSTIC ODYSSEY, TIMES FOUR Good afternoon. My name is Gina Szajnuk and this is my husband Justin Zanik. We have three undiagnosed children. Ava, is...
Three children getting scoped on the same day. What were we thinking?!
We 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...
Deseret News covers our Rare Children on the Court with the Utah Jazz!
Children 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:...
The gift of the Utah Jazz to our Utah Rare Families
This 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....
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...
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!
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...
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...