A little over a year ago, I met the cutest little bee rocking a gold tutu at FitOne.  She had two goals that day: let people know that it was Childhood Cancer Awareness month and win Keith Urban tickets.

With so much spunk in such a little person, we had to make sure Mady and her mom, Freedom got a chance to see Keith for participating in our "Be Bold in Gold" contest.  Over the next few days, I got to know them a little better and Freedom was helping to organize another awareness walk near and dear to the family's hearts. Both she and her daughter live with a condition called Neurofibromatosis (NF) that causes tumors to grow on nerves throughout the body. While many of these tumors are benign but it's hard to predict where they'll start growing.  Depending on where they grow these tumors could lead to abnormalities of the skin, bones and eyes, damage to the optic nerve and brain or heart defects. Some patients experience things like blindness, deafness or needing to have limbs amputated due to their tumors.

There's currently no cure for NF, but thanks to research funded by the Children's Tumor Foundation specialists are finding ways to manage the symptoms that come along with living with the disease.  Ongoing research is focused on drug therapies that may be able to shrink or halt the growth of NF tumors.

And there's where Freedom and Mady come in! They're a driving force behind this weekend's "Shine a Light on NF Walk" taking Place this Saturday at 5 p.m. at Scentsy Commons. Funds from the race will benefit the Children's Tumor Foundation and there's still time for you to get involved! Click HERE to register for the walk or support someone who's fundraising for the event. The event also includes face painting, a raffle, silent auction and chance for you to win Boise Music Festival tickets.

We talked to Freedom about the event and what it's like to live with a disease that most people have never heard of before.  Push play to hear what life is like for her and Mady.