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.
“My NF journey began with my mother who also has neurofibromatosis. When I was born, the doctors believed I had a brain tumor because my right eye was swollen and protruded from my face. My first surgery happened when I was eight days old, to relieve pressure on my right eye. In an attempt to save my eye and address some abnormal bone growth on the right side of my skull, seventeen more surgeries followed in eighteen years. However, I ultimately lost my right eye at age twelve.
“My biggest struggle growing up was not the frequent surgeries, MRI’s, blood tests, and neurological exams, but having to endure school. I was bullied cruelly and severely, even by kids I thought were my friends.
“Thankfully I have an incredible support system; two loving and protective brothers, two parents that never allowed me to use NF as an excuse for not doing well in school and in life, an amazing group of friends, and a wonderful boyfriend who never fails to remind me how beautiful I am.
“In December 2013, I graduated college with a degree in psychology and began working as a counselor at a local Crisis Center. I still have days in which I believe my bullies were right, but then I remember that I have already proved them all wrong. I remind myself just how smart, beautiful, and courageous I am for not letting them win.”
What is your hope for the holiday this year?
“My hope for the holiday this year is to be able to spend this holiday season with my grandparents. I have not spent Christmas with my grandparents in six years because they live in another country.”
What is your idea of the perfect day?
“What I consider a perfect day is being able to spend time with loved ones, whether it means cooking together or spending the day at the beach. My perfect day involves spending time with the people I love the most.”
What are you most looking forward to next year?
“I look forward to being able to travel more in this upcoming year. I would like to spend some time in Europe; I have friends and family that live all through Europe that I would like to visit. I also look forward to continuing my work with the local Crisis Center for the county I live in.”
If you would like to support our efforts to fund research to end NF,
please visit ctf.org/hope and make a donation to the Hope for the Holidays campaign.
