Amelia Nobis is seven years old, a second grader in upstate New York who loves to read, write, dance and sing. She adores her little brother and sister, is excited to learn to play soccer, and loves animals more than just about anything else.
But while she sounds like a typical, happy child, life for Amelia has
been anything but ordinary — or easy.
When Amelia was 4 years old, her mom, Chantelle, noticed what
looked like a lazy eye. Feeling that something was off with her daughter, Chantelle insisted that Amelia have a CT scan at the ER. The image on the scan was horrifying. Amelia had a golf ball-sized tumor in the left ventricle of her brain.
Amelia was rushed to a local children’s hospital for emergency brain surgery that evening. And the news just got worse: the tumor was a grade 3 meningioma — a rare and malignant tumor. Almost overnight, the entire family’s life turned upside down. Doctors quickly diagnosed Amelia with neurofibromatosis type 2 (NF2).
While neurofibromatosis type 1 affects one in 3,000, NF2 is considerably more rare, affecting one in 25,000 individuals. NF2 causes tumors to grow in the brain and spinal cord, often causing deafness, blindness, seizures, balance impairment, numbness and muscle weakness, chronic pain, and even death. While NF can be passed down in families, it can also spontaneously mutate — meaning it can happen to anyone.
Amelia has quarterly MRIs and is followed by a medical team that includes an oncologist,
neurologist, audiologist and ophthalmologist. She has been doing well, but her doctors recently noted a new spot at her tumor site, which they will continue to monitor. Amelia and her family live every day in the shadow of “active surveillance.”
The family also learned that Amelia’s dad, Pete, has NF2. Although his case (originally mis-diagnosed as Bell’s palsy) appears to be mild. Pete is a loving husband to his wife, Chantelle and an incredible father to three beautiful children, Amelia, Hayden and Blake. Pete is a dairy farmer and an independent contractor for the postal service. When Pete was 31 years old he went to the ER for what he thought was Bell’s palsy and after a second case of “Bell’s palsy” his doctor ordered an MRI that showed that he had acoustic schwannomas (a noncancerous tumor on the main nerve leading from the inner ear to the brain). Pete underwent Gamma Knife in 2009 and had to have steroid injections into his ear drums. Pete has slight muscle weakness on one side of his face, and a slight hearing deficit. Pete’s diagnosis of neurofibromatosis type 2 was later confirmed with genetic testing. Only time will tell the full effect of NF2 on Pete’s life. Pete sees a neurologist and also travels to Boston to see a specialist.
The Nobis family is doing what they can NOW to raise funds and awareness for neurofibromatosis. They formed “Amelia’s Army” and helped coordinate the Steps2Cure NF Walk in Camden, NY, and recently ran the Buffalo Half Marathon for NFNE to support research.
Chantelle Nobis says, “NF Northeast has helped us by giving us a direction to fight. To fight for our family and for the health of our family. We will fight for a cure for NF for the rest of our lives, and I feel like NF Northeast is leading our army.”