About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Thursday, April 27, 2017

Rare Bear

A few months ago we were approached through the International FoxG1 foundation with an opportunity to receive a rare bear.
RARE Science has initiated the RARE Bear program, a grassroots community-driven outreach for kids with rare disease. Community volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare” kids. http://www.rarescience.org/rare-bear-program/
Well today a special package arrived with the cutest little RARE bear inside. Jayen took to the bear right away. I don't know if he realized where it came from or what it meant, but he sure seemed to have a connection to it immediately. The bear is truly as rare as he is!
Thank you RARE Science and your team of volunteer quilters for making my son feel so special!
He may have needed a little extra loving today.


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