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When Grace was diagnosed with Krabbe disease we were devastated. We were told there was no cure, no viable treatment options, and that Grace would deteriorate until she could no longer sustain life. We were told there was nothing we could do. Nothing prepared us for the challenges we would face, for the physical and emotional stamina we would need, or for the enormous amount of love and heartache we would feel as we cared for Grace every day.

Throughout Grace’s life we felt so hopeless and frustrated by the lack of awareness and knowledge about Krabbe disease and how to care for Grace and her symptoms. We felt powerless and unequipped to meet our one simple goal: to keep Grace comfortable.

To celebrate and honor Grace’s life, we have created a fund in her name. “Sweet Baby Grace’s Fund” will be used to support research related to Krabbe and raise awareness about the disease. We hope that in Grace’s memory, a cure can be found so that other families can see their babies survive this horrible disease.

Please email us to donate to “Sweet Baby Grace’s Fund” can be sent to: deckeraly@hotmail.com