Zac’s Story: Surviving Neurofibromatosis
A walking ray of sunshine.
That’s how Carol Ann describes her 9-year-old son Zac, of Chisago City, Minn. Despite his ongoing battle with a disorder, neurofibromatosis (NF), Zac continues to inspire and bring smiles to everyone he meets. When Zac was nearly 19-months old, he developed what doctors refer to as “café au lait” spots on his skin. She also noticed that he seemed to be stumbling more than his older siblings had at his age. Carol Ann worked at a hospital and started to ask her colleagues about these symptoms, and they recommended she take Zac to a doctor right away.
Carol Ann brought Zac in to the doctor just a few days before Christmas, 2003. After an MRI and some tests, doctors discovered benign tumors in his brain and diagnosed Zac with neurofibromatosis type 1 (NF1), which causes tumors to grow in his brain and along his nerves and lymph nodes — and for which there is no known cure. The difficulty of the diagnosis was compounded because, at the time, Zac’s father Nathan was overseas in Iraq as part of his service with the Minnesota National Guard. Carol Ann, an admitted Christmas enthusiast, recalls, “That Christmas was incredibly tough. Not only was Nathan away from home, but I was dealing with a devastating diagnosis. I did all I could to pull myself together and make it a happy Christmas for the kids.” The family later made a decision to never schedule MRI appointments before the holidays.
NF is one of the most common genetic disorders in the United States. It affects more than 100,000 Americans; more than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined. Though many people have a family history and inherit the disorder, between 30 and 50 percent of cases occur due to a random gene mutation, as was the case for Zac. As a first course of defense, Zac received regular low-dose chemotherapy treatments to stop the growth of the tumors, which continued successfully until he reached age 5. Then, doctors noticed a new tumor, and a biopsy confirmed that it was malignant. Because this tumor was inoperable, doctors had to try different chemotherapy options to shrink it.
One tumor, an optic glioma, left Zac blind in his left eye. In 2009, Zac had surgery to remove painful fibroids that had grown outside of his skull – another common side effect of NF. Doctors continue to monitor him for fibroids, which could develop anywhere on his body. Despite the years of chemotherapy, surgeries, long doctors’ appointments and other challenges, Zac continues to be an inspiration to others. “He has a certain social intelligence that I can’t define. He can talk to kids and adults alike, and has a natural curiosity and goodness that brings out the best in everyone,” says mom Carol Ann.
One of Zac’s favorite activities is helping “coach” his older brother Nick’s hockey team. Before most games, the team’s coaches let Zac have the last word in the locker room. His go-to advice to the players? “All hat tricks, no penalties. Get out there and play hard!” Zac sits behind the players’ bench during the game, cheering them on. The team and coaches embrace Zac’s presence on the team. During a playoff game last year, Zac wasn’t allowed to sit behind the bench like he normally does, but instead sat in the seats right next to the bench. When the team won – they skated right over to Zac and pounded their sticks on the glass in celebration. The team even gave their trophy to Zac, which he treasures.
This past spring, the family organized a benefit near Chisago City. Included in the silent auction were drawings that Zac created. The event drew around 700 people and raised more than $24,000 for the Zachary Neurofibromatosis Fund that Zac’s grandfather, Harvey Bartz, organized. As Harvey saw it, “This community wrapped their arms around Zac and his family to say ‘we’re with you.’ Just as important as the money, is seeing the community rally around Zac.”
In terms of Zac’s ongoing treatment, he underwent radiation treatment called tomotherapy, which finished in March, 2011. “Tomotherapy hit him hard,” says Carol Ann. He continues to suffer from adverse effects – mainly nausea and exhaustion. Many school days, Zac visits the school nurse to rest, and is accustomed to and prepared for severe bouts of nausea. The good news is that the tomotherapy has been effective at shrinking the tumors. While the tumors have remained stable, doctors don’t expect them to ever go away completely. They continue to check his tumors with MRI scans every three months. It’s a lifetime disorder, and the family never knows when tumors will start growing again.
At Zac’s most recent MRI in mid-January, the family received the incredible news that the tumors have continued to shrink. After seeing the scan, Zac uttered one word, “SWEET.” The family continues to raise money for research while celebrating Zac’s daily milestones and the joy that he brings to their lives. “We’re all praying for a miracle,” says Harvey. Doctors are hard at work in search of better treatments for Zac and other kids and adults living with NF. Until then, we can all benefit from Zac’s sage advice to “Get out there and play hard!”