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Raelynn Urbanski's Fundraiser:

A cure for Batten (CLN6)

Raelynn's Photo
Raelynn's Photo
Raelynn's Photo

BENEFITING: Giving Back Fund

Raelynn Urbanski

THE STORY:

Hi face book family and friends. I have known many of you my whole life, others our paths have crossed through friendships or work. I know this may seem long but it is very important, so please read this to the end. As a parent or friends of parents we know what a rewarding and wonderful job this is. When our kids get sick we will stop at nothing to get them feeling better again. Working in health care and special education I know the high alert these parents go into. I am working with a wonderful family in CA, who have two amazing little girls, Charlotte 6 and Gwynn 3 who both have special needs due to a devastating disease called Battens. Battens is so rare that only 10 children in the world have it yet both the Gray girls have been diagnosed with this. Battens leaves a child cognitively verbally impaired and in time unable to eat paralyzed and blind. these children do not live pass the age of twelve. Please think about your children, nieces\nephews grandchildren or friends with children. Think about the future you see for them then realizing those dreams may never come true. Every child deserves to live a full and wonderful life where the word dying will never be a part of a families life. Thank you for sticking with me ,I now ask you from my heart to yours to please, please click on the attached link to see video https://youtu.be/n4jJ2LGF8nw and please have all your family and friends share this. Together we can be a part of finding a cure for Batten. Thank you again all my Love Raerae

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