Curing Neurofibromatosis (a tumor disorder), for this Three Year Old

Meet my little friend Jacqueline. Isn’t she adorable? She has a genetic tumor disorder called neurofibromatosis (also referred to as “NF”) and was recently diagnosed with myopic glioma, tumors that grow inside the brain. Jacqueline also has a tumor on her tongue and on the back of her head. Her mother, JoAnne Pastel, has been a dear friend of mine for many years and together we co-created Bur Bur and Friends®, a cast of characters who educate kids about differences and healthy living. JoAnne and I have co-authored 4 children’s books and Jacqueline  inspired creation of a new character we call Nina.

Jacqueline is sweet and funny and intelligent and beautiful. She lights up a room when she walks in the door and her infectious laugh is delightful. She is like a daughter to me and we are on a race to create awareness about this disorder and to find a cure!

I am humbly asking for your help to donate and/or share Jacqueline’s story so we can create awareness about neurofibromatosis. The link below leads to more information and includes an account by JoAnne from a mom’s point of view. Today is Give to the Max Day in Minnesota. It is a movement to encourage charitable giving. Thank you for your support.


About KakieF
To learn more about Kakie Fitzsimmons, please select "A NOTE FROM KAKIE" tab at the top left of this page. Thanks for visiting my blog!

2 Responses to Curing Neurofibromatosis (a tumor disorder), for this Three Year Old

  1. kris says:

    I send many prayers. my two year old and myself have nf1. She was just diagnosed with a optical glioma. My biggest fear is her losing her vision. Nuerfibro is ugly and the worst thing about it is its unexpected. It can cause so much. I hope they find a cure soon!

    • kakief says:

      Hi Kris, I am grateful for your visit and response to my post. I am sorry for the challenges you face from how this genetic disorder which has affected you and your family. I can’t imagine what it must be like to be in your shoes.

      What I can picture, is a world where we use the tools we have as a way to continue creating education and awareness that a cure is possible through our stories. Thank you for making a difference and sharing yours here. 🙂

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