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.
Katherin Sabbagh is 33 years old, is from Colombia, now resides in Miami, and lives with schwannomatosis.
Katherin says, “At age 16 I discovered a lump on the left side of my neck. It was believed to be cancer but a biopsy indicated it was a schwannoma.
“Three years later, I began experiencing severe pain in my hips. I had many tests done including an MRI that found tumors in the cervical and lumbar areas of my spine. At the beginning we didn’t know exactly what was happening. Doctors gave several names of diseases that had nothing to do with my condition.
Finally, in 2004, I was diagnosed with schwannomatosis.
“Since September 2000, I have had 22 surgeries, mostly in my spine. These surgeries have caused a number of consequences from which I am still recovering by doing physical therapy.
“Through the years, new tumors have appeared in other areas of my body but until 2003 my life was ‘normal.’ Then, that same year, I had four surgeries that changed everything and I had to work harder to recover. I have continued having new surgeries that have delayed my recovery process and also given me new consequences.
“I am currently trying an experimental treatment. This and many more of the experiences I have had led me to think about people who do not have the resources and support that I have. That is why I decided to create a foundation for them called NF Fighters.
“I think everyone has the right to live their lives with dignity and quality in the best way possible, no matter the situation. Attitude is very important. As human beings we feel defeated sometimes, but with love and support from those around us we continue the daily struggle. That is the objective of our foundation. I say ‘our’ because it belongs to each and every one of the people who work there and those that receive help with their needs.
“I want to do as much as possible to help find a cure for NF, or at least something to control this disorder, so that other people do not have to go through what I have.”
What is your hope for the holiday this year?
“I hope that everybody can spend time with their loved ones with no stress or any type of complications.”
What is your idea of the perfect day?
“A perfect day would be pain free and shared with the people I love and care about the most. The activity doesn’t matter, the company does!”
What are you most looking forward to next year?
“To find a cure or treatment that works for schwannomatosis, especially my type that seems more and more uncommon. Also, to recover faster and regain movement in my legs.”
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.
