Archive for August, 2014

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Ava and Addi Story

August 20, 2014 1:29 pm

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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...

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Ava’s Rainbow

August 20, 2014 1:08 pm

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After Ava was released from Children’s Hospital of Wisconsin, she went to stay at her the home of her grandparents. On July 19th, 2013, a rainbow magically appeared...

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Lucy Szajnuk

August 20, 2014 12:39 pm

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This is a section of Lucy’s story from The Szajnuk’s Journey I feel like I missed an entire year of Lucy’s milestones. Lucy started showing similar symptoms in...

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Update on The Szajnuk Family (aka The Zanik Family)

August 20, 2014 11:54 am

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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...

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Oskar Szajnuk’s Symptoms

August 20, 2014 11:40 am

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Oskar’s Endocrine Clinic Note:  “I encouraged mother to have genomic sequencing to try to elucidate the cause of what appears to be autosomal dominant dysautonomia.” CURRENT SYMPTOMS: -Cannot...

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Ava Szajnuk’s Symptoms

August 20, 2014 11:12 am

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Current Symptoms: -Severe headaches -Severe leg pain -Cannot regulate her body temperature (She overheats when active or in warm weather) -Hands and arms mottled -Entire body mottled -Face...

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Gina Wegner Szajnuk – Resume

August 20, 2014 10:30 am

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PROFESSIONAL EXPERIENCE July, 2014 – Present RUN (RareUndiagosedNetwork.org) Park City, UT Co-Founder RUN stands for Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, healthcare...

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Testimonial from a doctor that cares

August 16, 2014 11:30 pm

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One of my mantras as a physician is that while I can never truly know exactly what another person is experiencing, I should always strive to understand and...

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Testimonial from Tonya Condas

August 16, 2014 11:24 pm

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About 30 years ago my mother was diagnosed with progressive type Multiple Sclerosis. She was a stay at home mom and raised me and my brother with no...

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Testimonial from Chris Hart

August 16, 2014 10:42 pm

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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...

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