Shannon Keizer's Story

“Cystinosis has given me an appreciation and zest for life. It has allowed me to focus on the things that truly matter. Without Cystinosis, I would not be the person I am today.”

Five years ago, if you were to ask what brings me passion, I would have said “travel and adventure”. But now that I’ve reached the wise, old age of thirty, my answer is quite different. Although those things are still important, what I now find most thrilling is making a difference in lives. It’s about building relationships and being part of something bigger than one’s self. It’s stepping out of my comfort zone and being bold for the benefit of others.

Others have said that I seem to handle every curve cystinosis throws at me with power and grace. But being completely real, this entire past year I was a hot mess. Long story short, last October, a CT scan revealed three-inch, coral shaped stones filling both of my kidneys. Since then I’ve endured nine hospital stays, including four surgeries, various sepsis infections, and four months of c-diff. The trauma to my kidneys caused the function to tank to about 18%, and I was evaluated for transplant.

Fast-forward to December 25. Christmas was my rock bottom. What was supposed to be the most wonderful time of the year was spent in a pool of tears on the basement floor. I broke down, asking questions like, “Why is it that I do so much right in this world and get crap in return? If SO many people are praying for me, why can’t I catch a break?” Life continued while I was operating on autopilot. It was as though I was stuck at the bottom of a pit wondering if there would ever be a way out.

That following January while in the hospital, I received a call from Nancy Stack with news that the FDA had approved clinical trials for the cure. Immediately, overwhelming emotions and excitement came flooding over me. We’d anticipated this for so long but never fathomed it would happen in my lifetime. I remember thinking, “The only thing I’ve ever known is Cystinosis. Who/what would I be without it? How would this affect my future?”

Over the next several months, news of the trials sank in, my kidneys began to heal, and I gained a new sense of confidence. I made the bold decision to apply to nursing school and officially started classes this fall. I step into the unknown with faith that everything will work out. The cure has given me so much hope. It has given hope to the entire cystinosis community!

While I’m beyond thrilled about the potential of the cure, I am thankful for the impact cystinosis has made in my life thus far. Because of my disease, I view life from a different perspective. Cystinosis has given me an appreciation and zest for life. It has allowed me to focus on the things that truly matter. It is part of what drives me to live each day to the fullest and has instilled my deep compassion and empathy towards others. Without Cystinosis, I would not be the person I am today.

So many of you have already been part of my journey. I would not be where I am today without all of you. If you’re considering partnering with me financially, your contribution will help make a difference in the lives of many. Help me give back to the world that has provided so much throughout my life. Thank you for your continued support now and throughout the years.

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