Why we raise money for NF…
Deniro is turning 18 in a few weeks (we are still grappling with that), and we have been on a mission for more than 15 years (many of you have been on this journey with us from the start)! Since the day Deniro was diagnosed with Neurofibromatosis Type 1 (NF1), we have never stopped advocating and raising money that would support him and those diagnosed with NF.
Neurofibromatosis, pronounced neuro-fibroma-tosis, is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time. Many variables of NF may result in cancer, deformation of bones, scoliosis, and learning disabilities.
Aside from more common NF symptoms, Deniro has a plexiform neurofibroma, a complex, inoperable tumor involving areas of his head, brain, and face. He has undergone multiple surgeries and will continue to need surgery if we don't find a treatment. BUT….We are getting close! Deniro was 1 of 24 children in the US who participated in a clinical trial at Dana Farber Cancer Institute. He endured 4 years of taking an investigational oral chemotherapy drug that will hopefully lead to an FDA-approved treatment for those like him who have inoperable tumors.
After completing the trial and showing a 30% reduction in tumor size, we learned that he must remain on chemotherapy due to a 6-month follow-up MRI that revealed the tumor grew back to the original size before he started treatment. Thankfully, an alternate FDA-approved chemotherapy drug, the FIRST of its kind, was available for Deniro to start. We are so happy to report his tumor is responding to this new treatment, and his latest MRI has shown a decrease in tumor size! Which is excellent news. Unfortunately, the lifelong reality is that Deniro may require chemotherapy treatments and have to endure the unpleasant chemotherapy side effects that come and go.
As we continue to fundraise for the 15th year in a row, remember that Deniro is our son, and our pledge early on was to advocate for him and raise money that would benefit Neurofibromatosis. So, we kindly ask for your support and consideration in donating in his honor. We thank you from the bottom of our hearts for making this journey that much easier.
The overwhelming support for Deniro and our family strengthens our mission to find a cure year after year.
Love,
Dean and Jessica Bruno