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.
His mother, Shelley, says, “Jeremy has NF1 and was diagnosed with a malignant tumor at two months old. He lived in the Oncology Unit at Vancouver Children’s Hospital where he underwent surgeries to remove most of the tumor and was subsequently diagnosed with leukemia.
“He has been blessed to have had no major medical problems since then, but he did struggle through school due to bullies and learning delays that required occupational, speech, and physical therapy. He was home schooled during 7th grade due to debilitating headaches. However, chiropractic care alleviated the problem and he was able to return to his school for 8th grade.
“The doctors had mentioned NF when he was an infant but he went undiagnosed until age 11 when Denver Children’s Hospital found a benign mass on his brain stem. He also has freckling and cafe au lait marks on his body, and endures regular MRI’s.
“Jeremy has benefited from the Children’s Tumor Foundation’s support for himself and his family. He enjoys their events, meeting others with NF, raising money and awareness, and attending NF Camp in Utah each summer thanks to a grant.
“Jeremy has graduated from high school as well as trade school and works at Sam’s Club. We couldn’t be prouder of him.”
What is your hope for the holiday this year?
“I hope to spend time with my family and play with the gifts that I get on Christmas (aka video games:-])”
What is your idea of the perfect day?
“Staying at home with my family, playing video games with my little brothers, a late movie at the theater, (and not going to my job!)”
What are you most looking forward to next year?
“I am looking forward to summer! I will be turning 21 years old and becoming a 100% adult! My parents are taking me to Vegas, I am getting a new driver’s license, a new video game that I want will be released in June, I’m taking a vacation with my family, and I’m going to NF Camp!”
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.
