CRF Stories | Shannon Keizer

By Shannon Keizer 

April 23, 2016 will go down as one of the most memorable nights of my life so far. With the help of many friends and family, I hosted my first Cystinosis fundraising event. And most importantly, stories were shared and lives were touched.

I’ve always admired those who put on big events each year. I often thought of doing myself, but didn’t think I had what it takes or that anyone outside my family and close friends would really care what I had to say. That all changed when I moved to Seattle about seven months ago.

Since moving, I’ve gained self-confidence and discovered my voice. While attending a professional development training with about 150 other people, I stood up and shared my life story to a room full of strangers. There was not a dry eye in the whole place. People were moved and inspired. In that moment I realized I had a gift and a voice, and I needed to do something with it.

I talked over the idea of a birthday fundraiser with my dad. He immediately called his sister, my Aunt Mary, and asked her to fly out from Michigan to make a salad (her salads are quite bomb for large groups of people). What began with a salad turned into a whole menu, which turned into desserts, table decorations, and task delegating.  With one phone call I suddenly had a team of people that were committed to making my dream a reality.

This process allowed me to become close with the Head family, who live about an hour and a half south of my Seattle home. Melissa and I met at a coffee shop and discussed the process of hosting a fundraiser. An immediate friendship was formed. After spending Easter with the Heads, their kids began referring to me as another aunt, and I had a second family.

After months of preparations, my Michigan family (parents, aunts and uncles) flew in, and the days of chaos began. That famous phrase, “It takes a village” couldn’t be more true. I am so thankful for such wonderful friends and family who work together to accomplish something bigger than any one person.

The night was a success. It began with “Seattle’s Baritone Vocalist”, Ken Sabalza, singing inspirational songs from Frank Sinatra to “How Great Thou Art”. My dad, Kevin Keizer, MC-ed the night and shared the powerful story of my diagnosis. Melissa Head talked about the CRF and her daughter Mary’s story.

I completed the program speaking about my life and the lessons I’ve learned in my 27 years living with Cystinosis. Lives were touched, and people were moved. I wish I could put into words the magic that happened that night, but it would take at least another three pages to just touch the surface. The evening completed with a performance of “You Raise me Up” and audience participation in “My Girl”. People left wanting more and wanted to know what’s next. They were on fire. Days later, I’m still hearing about the impact it made in so many lives