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.

http://givemn.razoo.com/story/Give-To-The-Max-Day-Support-Families-Affected-By-Nf

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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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