This time of year, children all over the world are making their lists and checking them twice. In addition to new toys, fun games and socks (well, maybe not socks!), 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.
When you join the fight to end NF, you are ensuring that those living with NF are closer to a cure. We asked some NF heroes to share their story and their hopes for the coming year.
Gianna’s mother, Jessica, says, “My daughter, Gianna, or Gigi as we call her, is the strongest little girl I know. At nine months old she was diagnosed with neurofibromatosis type 1. She was born with about ten café au lait spots, but it wasn’t until she developed her first fibroma, on her wrist, that I become concerned. Now, at four years old, NF1 brings many challenges to our life. Gigi has a growing number of café au lait spots, some bone deformation, three iris Lisch nodules in each eye, and over 80 fibromas. She has endured yearly MRIs and countless exams, specialist visits, and doctor appointments, all while remaining positive and brave.
“Gianna loves being outside, animals, chocolate brownies, playing with her dolls and cars, and reading.
“As her mother, I am committed to increasing NF advocacy and awareness. This year, our family participated in both the Orlando NF Walk and the Boca Raton NF Walk. We really enjoyed spending time with others in the NF community and raising money to help end neurofibromatosis – for our little hero and for the millions worldwide affected by this disorder.”
What advice do you have for others facing similar challenges?
“Join social networking groups, do your homework, become an advocate for your NF’er, and always find the bright side of things.”
What’s a success or accomplishment you’re really proud of that happened this year?
“My daughter started Pre-K this year knowing all letters, numbers, sounds, colors and a few sight words!! Yay!”
What are you most looking forward to in 2016?
“Working more with the Children’s Tumor Foundation”
What’s one song that you never skip on your playlist?
“Gospel songs, they keep us motivated and encouraged; especially ‘I Am God’ by Donald Lawrence and ‘No Weapon’ by Fred Hammond.”
In your own unique way, you can make a difference in the lives of the millions of people worldwide with NF.
Be the one to step up, to make a gift, to educate others… and to play a critical role in the mission to end NF.
Click here and Be The One
