RUNning for Rare Zebras!

For the past two years I have been partnered with Emma, a member of the Gaucher community for the Running for Rare team. This year I am very excited to be partnered with the Szajnuk family, who represent the undiagnosed community. This is the 8th year that I have been running on the Running for Rare team. This is a special year for me as I will be running in the Boston Marathon (supporting PK and his patient partner Bug in addition to the Szajnuk family). In May, I will be running in the Providence half-marathon and in July at IRONMAN Canada for Gina and her beautiful family of undiagnosed children. I wanted to introduce the Szajnuk family and Gina has written a great introduction to her family and how they live in an undiagnosed world of being medical refugees.

 April 15, 2013 - Genzyme Marathon - 14410250098_639162819496309_6157506230668689646_n

Andrew is RUNNING FOR RARE for Ava, Oskar and Lucy! We are so excited to have Andrew in our lives. He is running the The Boston Marathon on Monday, April 16th! We have gotten to know him through FaceTime, phone calls and texting. We are going to be able to FaceTime with him during The Boston Marathon!  Ava, Oskar and Lucy think Andrew is so AWESOME!  For me, the mom/Gina, it means more than words can express…

Not only is he running for my three Rare and Undiagnosed children, he is running for me.  As a Rare and Undiagnosed mom, I was a huge runner before I had my hip surgery. I have not gone for a run in almost five years now. I am due for my second hip surgery.


He is definitely running for Ava. When Ava runs, she is in pain immediately. Her teeth and chin hurt. I remember watching her on the last day of Kindergarten in a race around the track. She started out in first place. By the end of the race, her face was bright red and she could barely walk. She finished the race holding her left side. She couldn’t speak. She was in so much pain. She didn’t give up. She crossed the finish line.

Oskar can run. He came in fourth last summer in a race around the track. He was the shortest kid but he was fast!

Lucy. Not so much. She didn’t even want to try to run around the track with Oskar and Ava. It was too hot and she was heating up inside.  They were nice enough to still give Lucy a medal.


All three children are currently Diagnosed as Undiagnosed.

When I think of Andrew running for us, I start to get my happy tears! Not only is he raising awareness for #RareDiseases, he is raising awareness for our family, #UndiagnosedDay. We live in the world of the unknown and in pain every single day. We have been on our diagnostic odyssey  for over four years now. We spend our days raising awareness for Utah Rare families, RUN families and the entire Rare and Undiagnosed community. To have Andrew raising awareness for #TheSzajnuks…makes me feel so very blessed.

Thank you, Andrew, for bring a little light to our dark journey. We are here to lift you up during your runs and to give you the strength to go the extra mile.

You are Running For Rare

nord-running-for-rare2zH3NojK_400x400 - Copy - Copy


You are Running For Ava, Oskar and Lucy

You are Running For me

You are Running For all of our RUN  families

You are Running For all of our Utah Rare families

You are Running For all of our Undiagnosed families

As one of our RUN dad’s, Gabe Valdez, says:




#RareUndiagnosed #RareDisease #BostonMarathon #Running4Rare #UndiagnosedDay #TheSzajnuks

Posted in Patient Stories
5 comments on “RUNning for Rare Zebras!
  1. Anne Burtenshaw says:

    Thank you for sharing. Here in Boston we are all looking forward to seeing Andrew and our other team members at mile 14 tomorrow.

  2. Gina Szajnuk says:

    Andrew – Words cannot express what this means to our family!! Ava, Oskar and Lucy are so excited!! Thank you for sharing our journey! Anne – please text me some pictures from mile 14!!! (310) 883-4353
    We would LOVE to have some pics during the race!

  3. Erica says:

    Thank you for sharing! As abfirner long un-diagnosed but rare,complex Patient just don’t give up searching! Someone will have an answer, some medical person will be able to help put a name to an as yet unnamed.


  4. Emma Rooney says:

    I think you’re pretty AWESOME too Andrew! Life changing experience to have been your partner for the past two years and of course still cheering and running with you. Thanks for introducing us to more members of the RFRD family. With you ALL in spirit.

  5. Dan says:

    Such an inspiration. Running is not easy, yet he endured all of it for a purpose. I truly hope that everything will be fine and healthy. All the best for Andrew and the kids.

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Archive of posts from Marathon runners dedicated to making a positive impact on the lives of people with serious disease.