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Megan Nuffer and her sister’s story, Katie…
Gina, My name is Megan Nuffer, I am the one that sat behind you at the concert, Melissa and I. I am so happy you gave me your...
Insurance company approves exome sequencing only for Ava. Denied Oskar and Lucy.
Our insurance company approved the exome sequencing only for Ava. This is a wonderful step forward for Ava. However, Oskar and Lucy need it as well. We also...
Denied
“Based upon current available information, coverage cannot be approved because there is insufficient scientific evidence to demonstrate the effectiveness of validity of whole genome sequencing for diagnostic purposes...
Insurance Company’s wording in our policy for Not covering Whole Genome Sequencing
Whole Genome Sequencing: Whole genome sequencing (WGS) consists of analysis of most of the DNA content in an individual’s genome. WGS has been used as a tool to...
Ava and Addi Story
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...
Ava’s Rainbow
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...
Lucy Szajnuk
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...
Update on The Szajnuk Family (aka The Zanik Family)
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...
Oskar Szajnuk’s Symptoms
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...
Ava Szajnuk’s Symptoms
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...