Archive for the ‘Ava Szajnuk’ Category

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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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Racing for RUN, National Ability Center’s Barn Party and Ava’s Birthday!

June 4, 2016 5:02 pm

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Thank you to Matthew Webster, Ciara Jo Webster and their entire family for their dedication to the Rare & Undiagnosed Network RUN and Utah Rare community. Thank you...

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Unexpected Mother’s Day Gifts: Szajnuk’s WGS Results, Acceptance into the UDN x 4 and more…

May 8, 2016 8:03 pm

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Update on our Szajnuk’s Diagnostic Odyssey x 4: This week was a very memorable week for our family. Our first meeting regarding the results from our Whole Genome Sequencing (WGS) was...

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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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Gina Szajnuk: Praying to keep Ava safe as well as healthy. Thank you to kind strangers for your help last night!

September 5, 2015 9:55 pm

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Gina Szajnuk: Last night was supposed to be a very special night for Ava and me. Justin bought us tickets to the Taylor Swift concert at the Energy...

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Ava Szajnuk: Going back to school for a rare child is different than a healthy child

August 25, 2015 4:39 pm

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Gina Szajnuk: Getting ready to go back to school for a rare child is a little different than a healthy child. When most families are just shopping at Target...

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Insurance company approves WES analysis for Oskar. Lucy Denied. Gina Denied.

March 16, 2015 11:53 pm

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Our insurance company just approved the WES (whole exome sequencing) analysis for Oskar. Great news! Thank you!!! However, they DENIED the WES analysis for both Lucy and Gina....

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A diagnosis is not coming any time soon for the Szajnuks. Not for Ava, Oskar and Lucy. Not for me.

March 10, 2015 5:38 pm

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I met with my specialists for yet another round of appointments over the past week. There are still no answers for me. I had a few more diagnostic...

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Ava Szajnuk’s Journey

August 4, 2014 12:29 pm

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Ava Szajnuk’s Journey Born: June 4, 2007 Saved on June 15, 2013 Saved again on June 26, 2013 Saved again on July 3, 2013 Saved again on July...

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