Like most parents, Brittany noticed everything about her daughter, Violet, after she was born in June 2015—from her energy and liveliness to her quirky birthmarks, which she and her husband brought to their pediatrician’s attention at a routine check-up. These “café au lait” marks were not an immediate concern, their doctor said, but could be connected with a disease called neurofibromatosis, a group of genetic disorders that causes tumors to grow on nerves throughout the body and can cause blindness, deafness, learning challenges, pain, and cancer, among other complications.
As time wore on, Violet started developing more symptoms, including an increased number of café au lait marks as well as Lisch nodules on her right eye, which caused it to occasionally lose focus. This second tell-tale mark of neurofibromatosis—and a follow-up MRI—led to an official diagnosis of neurofibromatosis 1 (NF1), the most common type of this disease. Violet was not yet 2 years old.
“We were devastated,” Brittany recalls. “With three other children counting on us and Violet’s health on the line, my husband and I knew we had to stay strong for our family.” Violet went through a year of treatment at Dana-Farber Cancer Institute’s Jimmy Fund Clinic for her NF1 tumor, which responded well to treatment and soon stabilized, although causing her to become legally blind in her right eye. Unfortunately, that wouldn’t be the last they would see of the clinic.
After three years of clean scans and a normal, fun childhood with her siblings, Violet started experiencing daily headaches when she began school in September 2021. “We thought it must be because of her vision and straining her eyes to see her work or her teacher while at school,” Brittany explains. “We didn’t think for a second that we were up against a second brain tumor.” That November, Violet, now 7, was scheduled for a routine MRI, which found she did in fact have a second tumor, closely located to the pituitary gland, which affects hormones, growth, and development. The family was shocked.
Since Violet’s first tumor had responded so well to treatment, her team tried the same plan, which unfortunately affected Violet’s body much more. She lost a significant amount of hair and weight, and although she tried to stay active at school and with her friends, the treatment took a big toll on her body and energy levels. After a few months, Violet developed an allergic reaction to her chemotherapy, which was a blessing in disguise, as a new drug was as effective with fewer side effects, bringing back her energy and enthusiasm once again.
Violet recently completed treatment in early 2023, after weekly visits to the Jimmy Fund Clinic and forming deep friendships with other families along the way. Some of the family’s most treasured memories from treatment have been taking the field at Fenway Park as part of “Go Gold for Childhood Cancer Awareness Month” each September. Violet had the chance to take the field again in June as part of Jimmy Fund Day at Fenway, when she joined other patients to bat, field, and run the bases at the beloved park.
“Nothing prepares you for the adrenaline rush of taking the field,” Brittany says. “The crowd cheering on the kids for Childhood Cancer Awareness Month was overwhelmingly heartwarming.”
“Violet being diagnosed with a brain tumor has changed so much for our family,” she continues. “We no longer complain about the little things or take things for granted. We see even more now just how valuable our time together is.”
Violet continues to inspire her family, other patients, and the entire Jimmy Fund community this summer, as she partners with Jimmy Fund Little League presented by Franklin Sports to encourage Little League baseball and softball players as they raise funds to help patients of all ages strike out cancer.
“Without the support of donations, we wouldn’t be where we are today,” Brittany says. “The continuous research conducted at Dana-Farber is lifechanging to patients and families like ours. We are so grateful for the Jimmy Fund community.”
You can support patients like Violet by joining The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org.