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February 28, 2018 9:27 pm
16RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...
December 31, 2017 11:22 pm
7As 2017 comes to an end, we want to wish you all a safe and healthy 2018! Thank you to all of our RUN families for continuing to...
March 21, 2017 10:40 am
4UNDIAGNOSED IS A DIAGNOSIS: Living in a Diagnostic Odyssey x 4 By Gina Szajnuk I have three children that are officially diagnosed as Undiagnosed. They have an Undiagnosed...
October 2, 2016 9:31 pm
3Today was a good day. It was a really good day. It is one of those days that I will never forget. Ava, Oskar, Lucy and I stepped...
March 25, 2016 4:09 pm
5Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....
March 11, 2016 4:38 pm
8Lucy has had stomach pain for a week now. We just figured it was her normal stomach pain. However, she’s begging for a scope. She’s been screaming crying...
January 1, 2016 1:21 pm
5Spending the Holidays with yet another urgent care visit, ER visit and hospital admittance, it made me realize how much I wanted 2015 to end. We need 2016...
September 28, 2015 5:22 pm
9My role in life is to advocate for my three children that are currently living in the medical world of the unknown. Our family lives on the sideline...
August 16, 2015 6:30 pm
7Gina Szajnuk: Lucy’s blood and urine cultures came back negative today. We will not have a solid diagnoses for her 31,000 white blood cell count or her fever...
August 16, 2015 3:13 am
8Gina Szajnuk: Lucy has had a fever the past three days. It has been as high as 106 degrees. Her white blood cell count this morning was 31,000...