Curing Neurofibromatosis (a tumor disorder), Help My Four Year Old Friend
Posted by KakieF on July 16, 2012
Meet my little friend Jacqueline and her big brother Billy. I love this moment I captured on film a while back because it screams delightfulness that only children can emit.
Jacqueline has a genetic tumor disorder called neurofibromatosis (also referred to as “NF”) where nerve tissue grows tumors for life and there is no cure. She has myopic glioma, tumors that grow inside the brain and can result in visual impairment or blindness. She also has an abnormal mass on her tongue and on the back of her head.
Imagine what it is like to be her family, dear friends of mine, who have to take her to several specialists at The University of Minnesota’s Amplatz Children’s Hospital each month.
Jacqueline is silly, funny, intelligent and has an infectious laugh. My son adores both her and her brother. They are all like siblings and we enjoy being in their presence.
I am humbly asking for your help to share Jacqueline’s story so we can create awareness about neurofibromatosis. Register to join us on on July 29th at Minnehaha Falls along with the Children’s Tumor Foundation for Jacqueline’s Team Walk Away to help raise funds to find a cure.
One of the greatest gifts we can give is being of service. Being present for others is an important aspect of leadership and has the power to be a healer, connector, teacher and a friend. If you are unable to join the event, please donate to Jacqueline’s Team Walk Away in her honor and help make a difference.
Thank you for your support.