Search results for ‘Ava’
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The loss of Christina “Tina” Tournant
I read the post from the Dysautonomia Advocacy Foundation on Facebook earlier this week. It stopped my heart for a second. Christina “Tina” Tournant took her own life due...
Please Register and Vote! Wearable Devices, Precision Medicine and Temperature Regulation
PLEASE REGISTER AND VOTE! THIS COULD HELP OUR FAMILY!! http://markhoffmankc.com/wearable-devices-precision-medicine-and-temperature-regulation/ Wearable Devices, Precision Medicine and Temperature Regulation This entry was posted in #Research#ResearchImprovesLives#ResearchSavesLives on March 6, 2015 by Mark...
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...
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...
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...