This time of year, folks 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.
“Maddox was diagnosed with NF1 in May of 2013 following an emergency surgery to relieve hydrocephalus, or water on his brain. That day, we learned that Maddox has a lesion on his brainstem. We would later learn that he has a massive tumor called a plexiform neurofibroma that runs from his skull to the T4 vertebra on his spine, and it also stretches up into his jawline. It affects his airway and his back. The following year, we discovered that he is virtually blind in his right eye. He receives occupational therapy, physical therapy, and special services to assist him in school.
“Seeing him, you would never guess that he has so much going on inside of his little body. He is a happy child with many interests and talents. Maddox loves making and eating mac and cheese. In fact, he wants to open a mac and cheese restaurant one day. His mac and cheese is seriously delicious, and he is a very determined boy, so I could see it happening! Maddox loves stuffed animals, and he can usually be seen toting one around. Maddox’s favorite TV show is ‘Teen Titans Go’, and, much to my dismay, his favorite activity in the whole world is playing on the iPad. Maddox also loves drawing pictures, he goes through stacks and stacks of paper, and playing baseball on our city’s Challenger team, the Angels.
“Our first real interaction with the Children’s Tumor Foundation was at the Los Angeles NF Walk in October 2013, about six months after Maddox’s NF1 diagnosis. It was a very emotional experience for us. We felt so uplifted by the support of our friends and family who attended the Walk with us. I was amazed by the donations that we were able to raise and I was so grateful to find a community of people who were facing similar struggles.
“The following year I decided to share Maddox’s story by making a video of his journey. We were blown away by the audience we were able to reach, and it was such good therapy for us. In one month, we were able to raise roughly $10,000 for the Los Angeles NF Walk!
“Last year, I was honored to be invited to CTF’s annual NF Forum. It was so inspirational! I left even more determined to increase my family’s involvement with the Children’s Tumor Foundation.
“We couldn’t be more proud of Maddox; he is the most joyful, loving, positive little boy, and he is adored by all who know him. He faces his challenges with strength beyond his years. He will tell you that God made him extra special, and this is for certain.”
What advice do you have for others facing similar challenges?
Get involved with the Children’s Tumor Foundation. Dig in and get your hands dirty! Volunteering for CTF has changed my life and my focus. As a mother, there is nothing worse than feeling helpless. I could not handle being stuck in “helpless mode.” I had to feel like I was doing something to help Maddox. That’s when I pulled myself together and got to work. Now I know that I am doing everything I can to advocate, raise awareness, and fundraise. It feels amazing to know that I am helping CTF get to a treatment and, one day, a cure for NF!
What’s a success or accomplishment you’re really proud of that happened this year?
Team Maddox was able to get the LA Citadel to use their massive LED signs that line the 5 Freeway to post CTF’s logo on May 14th, World NF Awareness Day. That was pretty cool!
What are you most looking forward to in 2016?
“Our second annual Team Maddox Undie Fundie, a party/carnival in our underwear to raise funds for Cupid’s Undie Run. Maddox loves that he is able to be involved with Cupid’s, and he loves wearing his underwear on his head at the party! I’m also seriously looking forward to the NF Forum. It was one of the most important gatherings I’ve attended in my life. I hope never to miss it!
What’s one song that you never skip on your playlist?
“’Hey Ho’ by the Lumineers. We say that it’s ‘our song’ because of the line, ‘I belong with you, you belong with me. You’re my sweetheart!’”
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
