Search results for ‘Lucy’
Page 10 of 11
Szajnuk Update. The journey continues. And, I am very scared.
Dear 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...
Traveling with oxygen
Today 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....
Hearing the words “Unknown Progressive Disease”
I 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....
Goodbye 2014!
As I sit at my computer on New Year’s Eve, I realize that I am ready for 2014 to end. Goodbye! See ya! Not looking back. No way....
Living with cold intolerance
Living in Park City is a blessing. It is absolutely beautiful. The snow finally came… Unfortunately, it does not make it easy for us to exist outside. A...
Advisory Board
The RUN Advisory Board Mission & Vision Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions. Urge insurance companies to reimburse genome sequencing in...
Ava and Addi Story
June 29, 2014 In the spring of 2013, Ava’s journey lead her to the Mayo Clinic. Ava had been to the Mayo Clinic previously. However, this was Oskar’s...
Update on The Szajnuk Family (aka The Zanik Family)
April 27, 2014 Dear Family and Friends, I wanted to update you again on our family. I have had so many wonderful people reaching out to us recently...
Oskar Szajnuk
2013: Oskar Szajnuk was diagnosed at the age of four with an unknown genetic dysfunction, an autonomic neuropathy, small fiber polyneuropathy. He is extremely low in ferritins, which...
Testimonial from Chris Hart
In a friendship that has spanned thirty years, though the ups and downs of life, you might wonder where will this begin? It is without question in my...