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August 20, 2014 1:29 pm
1June 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...
August 20, 2014 1:08 pm
3After 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...
August 20, 2014 12:39 pm
9This 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...
August 20, 2014 11:54 am
2April 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...
August 20, 2014 11:40 am
1Oskar’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...
August 20, 2014 11:12 am
2Current 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...
August 20, 2014 10:30 am
1PROFESSIONAL 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...
August 16, 2014 11:30 pm
1One 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...
August 16, 2014 11:24 pm
3About 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...
August 16, 2014 10:42 pm
2In 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...