We have had a long day of negotiating between the University of Utah Hospital and Intermountain Primary Children’s Hospital for Rachel’s care today. She has two amazing doctors trying to figure out the best place for Rachel to be admitted tonight. She was accepted at both institutions but there were no beds available at the University of Utah Hospital. She will now be admitted at Primary Children’s Hospital and they are determined to get her to gain weight and to get her stable.

Please pray for Rachel. This is a scary time right now for her family as well as for her doctors. We need to figure out why she is not gaining weight. She has lost way too much too fast. We need her and her entire family to know that we love her and we support her. Kate and Dale – stay calm and strong.

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We also have had a huge day praying for Calen. Calen has been in a major surgery all day today.  He is still in there now.  The surgery is going well and we need to pray for a fast recovery! We need to send some major love to their family tonight. Josh and Robyn have been there for all of our RUN families this past year.

Josh and Robyn – stay calm and strong.

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Thank you for your continued support of Rachel and Calen as well as all of our RUN families suffering with a Rare or Undiagnosed disease.

Both of these families can do hard things. 

When I started RUN, it was my dream to help rare and undiagnosed families navigate the current medical system. I never wanted another family to get lost in the system. Thank you to Kate and Dale for trusting me with their medical files and allowing me to advocate for Rachel. This has been an incredible journey and it is an honor to help my RUN families. Thank you to the other families allowing me to help them navigate the system. We have a lot of work to do and I love you all.

Much love,

Gina