CLEVELAND — When Maddie Fries was just 10 months old, her family received a diagnosis that would shape the next several years of her life: neurofibromatosis type 1, a genetic condition that causes tumors to grow on nerve tissue throughout the body. For a while, life went on. Then doctors at Cleveland Clinic found something that changed everything — not one, but two tumors growing along the nerves connecting her eyes to her brain.
Maddie was 3-years-old. And her vision was at risk.
What is Neurofibromatosis Type 1?
Neurofibromatosis type 1, known as NF1, affects approximately 1 in 2,500 people, making it one of the more common genetic disorders, and many people have never heard of it. In half of all cases, a child inherits the condition from a parent. In the other half, it appears as a new genetic mutation with no family history.
NF1 causes tumors to develop along the body’s nerve pathways. They can appear under the skin, deep within the body, or, as in Maddie’s case, along the optic nerves that carry visual signals from the eyes to the brain…