Archive for the ‘Lucy Szajnuk’ Category

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RUN’s 2018 Rare Disease Day!

February 28, 2018 9:27 pm

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RUN’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...

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Wishing you a Safe and Healthy 2018!

December 31, 2017 11:22 pm

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As 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...

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UNDIAGNOSED is a DIAGNOSIS: The Szajnuk’s Journey Updated!

March 21, 2017 10:40 am

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UNDIAGNOSED 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...

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Gina Szajnuk: “Today is one of those days I will never forget”

October 2, 2016 9:31 pm

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Today 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...

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Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families

March 25, 2016 4:09 pm

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Thank 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....

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Headed to ER with Lucy Szajnuk

March 11, 2016 4:38 pm

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Lucy 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...

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Lucy admitted. Ava with “mast cell” like rash. Goodbye 2015! Praying for answers in 2016!

January 1, 2016 1:21 pm

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Spending 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...

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Lucy Szajnuk’s Dog Attack: Rare and Life isn’t Fair: Open Letter regarding a NO DOG policy on all Soccer Fields in Park City, UT

September 28, 2015 5:22 pm

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My 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...

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Lucy Szajnuk Update: No solid answers for infection and fever

August 16, 2015 6:30 pm

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Gina 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...

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Lucy Szajnuk spending the night in observation at Primary Children’s

August 16, 2015 3:13 am

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Gina 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...

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