Maddie Lawrence's Story

“We so desperately need this cure. I need to know that my daughter and all other cystinosis warriors can live a full life.”

June 8th 2018, this is the day our world was turned completely upside down. Our sweet Madeline was diagnosed with a rare disease called cystinosis. She may require 2-3 kidney transplants in her lifetime, and is now getting medical intervention every 6 hours of her life. This is what it looks like annually at a minimum:

  • 6570 syringes of medicine
  • 4745 pills taken
  • 4380 eye drops
  • 8 blood draws

We were introduced to CRF shortly after Maddie’s diagnosis. CRF raises funds for cystinosis research and creates awareness for our small cystinosis community. Most importantly, CRF is making a difference in our children’s lives with improved treatments and the potential for a cure. We so desperately need this cure. I need to know that my daughter and all other cystinosis warriors can live a full life.

We appreciate your support,
Shannon, and Kevin, Hudson and Maddie Lawrence

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