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Meet NF Hero Joseph Fontenot!

By December 5, 2014February 27th, 2024Awareness, NF1, Story of NF, Ways to Give

At this time of year, children all over the world search through catalogs, peer into store windows and compile a list of gifts they hope to receive during the holiday season. Bikes, dolls, chemistry kits, and video games top the lists of so many children.

Our NF Heroes have additional hopes: less chemotherapy, fewer doctors’ appointments, reduced tumor size. At the Children’s Tumor Foundation, we are working relentlessly to fulfill that hope.

This holiday season, we asked some NF Heroes and Champions to share their story, their hope for the holidays, and thoughts for the coming year.

Joseph, born November 19, 2009, is the youngest of three brothers and was diagnosed with NF1 as an infant.

His mother, Debi, says, “Joe loves Ninja Turtles and anything rough and tough. He’s your typical boy! God has blessed him with such a great attitude for all he has endured in his life thus far.

“Joe has many café au lait spots, or ‘my pots’ as he calls them. He also has minor speech and fine motor skill issues, for which he receives therapy, and his most recent MRI revealed a plexiform neurofibroma near his spine, mild scoliosis, an enlarged optic nerve, and small tumors in his brain and neck.

“Joseph’s journey will be a long, tough one but God has given us wonderful support from our family, church community, foundations like CTF and Beauty Mark Nation, and groups like ‘NF Moms Rock!’ on Facebook.”

What is your hope for the holiday this year?

Our hope for the holiday is peace for all those affected by NF, especially parents like myself and my husband. Most of all peace for Joseph as he continues on his journey.

What is your idea of the perfect day?

A perfect day is the simple ones! No rushing to doctor visits, ball practice or school. Being home with our family, whether we’re outside playing or inside snuggled up watching a movie.

What are you most looking forward to next year?

What we most look forward to in the coming year and every year after is a cure for NF. Always Hopeful!


If you would like to support our efforts to fund research to end NF,
please visit and make a donation to the Hope for the Holidays campaign.