Jamisons Butterfly Bash
Jamison Rose is the most loving, friendliest, and full of life 4 year old you will ever meet. People always remark about what a delightful, social and outgoing child she is, truly a very special girl. In a word, Jami is joy. Our baby girl was diagnosed with Cockayne Syndrome, a very rare genetic syndrome.
It has NO cures, NO treatments, and is 100% terminal.
Being told that your child has a limited lifespan, and there is nothing you can do to help her, is the most powerless feeling in the world. As her mother, I choose to fight; fight for Jami, fight for a cure, and fight for all the other families who are affected by this devastating syndrome. We are hosting Jamisonís Butterfly Bash in the hopes of funding the critical research needed to find a cure or viable treatment for this disease. Our research team is so close to finding answers. With your help, Jamison and children like her, can have the chance to live longer and fuller lives.