Lucy was sent home from school today because she complained that her entire body hurt.  When she got home her fever wasn’t very high. However, she continued to complain and would not eat or drink anything. Around 5:30p, her fever started to increase every ten minutes, even after Ibuprofen.  As some of you know, Justin and I are currently in Hawaii with the NBA Utah Jazz for their pre-season games against the NBA Los Angeles Lakers. I am writing for your prayers…but I am also writing to keep me CALM as there is NOTHING I CAN DO FROM HAWAII RIGHT NOW.

Due to Lucy’s recent dog attack, we need to rule out an infection. We are praying that this is just the flu or a virus. However, Lucy’s body does not handle any kind of  virus or infections well because of her autonomic neuropathy.  When she gets sick, like all kids do, her reactions tend to be more extreme than other children. She was just hospitalized a few weeks ago. She was just there for the dog bite. How much more does my little Lucy need to suffer? The medicine she has to take gives her so much anxiety. The doctors give her so much anxiety. She will have to give blood again today. The needles give her so much anxiety. This is not fair. Why so much pain for rare children? Why do we never catch a break? Any answers for me? I’m listening? God? What am I doing wrong?  Why rare? Why undiagnosed? WHY? (I probably sound overly dramatic but it is how I’m feeling as I sit looking at everyone around me having fun on the beach and swimming in the pool)

This is exactly why I worried about both Justin and me leaving our three rare children. At least when the dog bite happened, Justin was there to comfort Lucy and handle everything. Fortunately, we surrounded our three children with two amazing young and strong women, Brittany and Nikki, as well as our friends and neighbors.

Brittany was with us in Chicago through all of Ava’s surgeries. Brittany is actually the one that saved Ava’s life. When I was outside blowing leaves that day two years ago, Brittany is the one that said, “Gina. You NEED to take Ava in again.”

I said, “They keep sending us home.”

Brittany, “I know. Go. Go again. Keep going.”

As you remember, Ava would have died that weekend if we had not taken her. Brittany loves my three children as much as I do. She is like a daughter to me. She is now a mother herself. She brought her baby, Jacob, with her on this trip.

We also have Nikki helping with our children. She is our current nanny here in Park City. Nikki is family as well. Nikki is very calm in these situations. She handled herself so well during Lucy’s dog attack. Thank you, Nikki. Keep being calm and strong.

I’m sitting here typing away…trying not to cry. I’m praying that I will get the call tonight that Lucy is fine and on her way home with Nikki to sleep in her own bed.

Thank you for your continued support, love and prayers.

Thanks for letting me vent and letting me share our journey with you. All the highs as well as all of our lows.

Much love,

Aloha

gina

*The two pictures are from over this past weekend. Brittany sent them to me.

*If you haven’t read Brittany’s blog, please do Brittany Stangley Shares Her Journey

About Gina:

Gina Szajnuk was born and raised in Madison, Wisconsin and moved to Salt Lake City, UT, where she serves as the Co-founder and Executive Director for the Rare & Undiagnosed Network (RUN). Her three beautiful children, each of whom live with a rare and undiagnosed disease, continue to inspire and motivate her as she fights for clinical whole genome sequencing to be covered by insurance companies. Gina was recently asked to be the Utah State Ambassador for NORD (National Organization for Rare Diseases). She served on the Executive Committee for Utah Rare 2015. She is now the Chair of Utah Rare for 2016. She is on the Program Committee for the National Ability Center.