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tammajean

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1 reviews

Review for Systemic Jia Foundation, Cincinnati, OH, USA

Rating: 5 stars  

Our son, Evan became very, very Ill in August 2015. He was 10 years old. After MANY ER visits and three inpatient stays he was diagnosed with SJIA. His symptoms were terrifying! The third hospital stay upon admission the pediatrician came clipping down the hall quickly after seeing Big E's lab results. The doctor suspected HLH or MAS, both can be lethal.
I began searching the internet for information. There wasn't much out there. I then searched Facebook- search word (MAS.) This led me to a momma blogger. I recognized that rash, the fevers, the terrifying labs and messaged Emma. Emma responded immediately fearing E was in Macrophage Activation Syndrome. I had an ally from then on. Emma then introduced me to the SJIA Community. Evan had subclinical MAS twice in a year. Advocates took me under their wing. I was so afraid that I felt paralyzed. I was in denial. We searched frantically more than 5 opinions! The Systemic JIA Foundation held their first ever family education day at Cincinatti Childrens Hospital. Our friends and family surprised us with support to make this trip. Since SJIA is rare education is crucial to try to keep our kids safe. Since our first meeting with the foundation we have had more opportunities to support research and advocate for awareness. It means the world to us that the Foundation is always ready to do life saving advocacy. They will fight for us!!!! I'm honored to be part of this community and take part in any opportunities to further their mission. They save lives.
Cure SJIA
#TheBigEThatCould has a much better quality of life after starting a biologic called Ilaris. He requires chemo shots every week. He is stable but has not reached remission.

Thank you from the bottom of our hearts. ❤
Tammy and Corey Woodwick

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