Skip to main content

Stories of NF: Madelaine K

By November 11, 2022December 4th, 2023Awareness, NF1, Story of NF

Madelaine was diagnosed with NF1 (neurofibromatosis type 1) when she was four months old. It was a faulty genetic condition from a spontaneous mutation. She had many cafe au laits right after she was born. At times, as a mother, I feel scared and helpless. There is currently no cure for NF1. Other than her NF1, she is a very cheerful little girl who brings joy to our little family. I just want to share my story to make NF visible and find a cure to this rare disease. Please help by spreading awareness.

I am just an ordinary mother who wants my daughter to lead a normal life. I love to hear from other fighters and be connected with them. I am kind of scared of what the future would be like for her because it’s like a ticking bomb illness. I want her to have all the happiness in life and have a family who loves her in the future, and hope that a cure can be found.

– Submitted by Madelaine K’s mother


“Don't be discouraged. Many big things start with small beginnings.”

Favorite Vacation

Spending time with our small family at the beach