In the fall of 2021, Gabriela Perez got out of her mom's car at school like any other morning. But that day, there was something off about how Perez, then 16, was walking up to the building.
"She was dragging the left side of her body, including her arm and her leg," recalls Alexandra Toscano, 25, Perez's older sister in Parlier, California. "She felt her left side tingling, like (it was) numb," she tells TODAY.com.
Knowing that something wasn't right, Perez's mother immediately took her to the local hospital. After a series of tests, Perez was transferred to Valley Children's Hospital 45 minutes away in Madera, California for even more thorough testing.
"That's when they mentioned to my mom that they had found some tumors on her nervous system," Toscano says. "And that's when everybody's world just dropped."
What is neurofibromatosis?
The family learned that Perez has neurofibromatosis, a genetic condition that leads to the abnormal growth of tumors along the nervous system. In most cases, the tumors are not cancerous, although they can become cancerous later on, the National Institutes of Health explain.
There are two general categories of neurofibromatosis: NF1 and NF2, Dr. Audrey Green-Murphy, a pediatric neuro-oncologist at Valley Children's Hospital who helped treat Perez, tells TODAY.com.
NF1, which is the more common condition, may cause skin spots, tumors along the nerves and learning disabilities, she explains. Because people with NF1 often have six or more distinctive marks on their skin, known as café-au-lait spots, doctors or parents often catch NF1 earlier than NF2, Green-Murphy says.
On the other hand, NF2 is "much rarer and much harder to diagnose," she says. This condition causes slow-growing tumors to develop along the cranial nerves, most commonly along the hearing pathway. Those tumors can cause hearing or vision issues as well as balance problems and, down the line, muscle weakness and even seizures, NIH says.
"You might have ringing in your ears and not know that it could be a tumor that's growing there," Green-Murphy says. Because these symptoms can be less obvious than those associated with NF1, patients with NF2 "tend to be folks who are even older than (Perez) when they come to diagnosis, sometimes in their 20s and 30s," she adds.
With genetic testing, doctors confirmed that Perez had NF2. In some cases, NF1 and NF2 run in families, Green-Murphy explains, but they can also arise due to spontaneous genetic mutations that lead to changes in proteins that result in tumors.
Aside from the muscle weakness, numbness, and a "light headache," Perez hadn't experienced any warning signs, Toscano says.
A large tumor was pressing on her spinal cord.
Not all patients with NF1 or NF2 need surgery to remove their tumors, Green-Murphy says, especially if the tumors aren't causing any worrying symptoms.
But Perez needed surgery quickly “because the tumors were pressing down on her nerves,” Toscano says, “and the bigger tumor was located behind her neck.”
She had “a very large number of tumors all along the length of her spine,” Green-Murphy says, including two on the nerves to her ears that were threatening her hearing. “And one of the tumors that started to grow... was compressing her spinal cord," she recalls.
About a week into her stay in the hospital, Perez underwent a 12-hour surgery to remove that large tumor, which had been causing her muscle weakness. If left untreated, the tumor "was going to threaten her ability to breathe, her ability to regulate her heart rate and her ability to move all her extremities because of how high it was in her spinal cord," Green-Murphy says.
Unfortunately, after the massive surgery, Perez developed a serious complication: a spinal fluid leak. During the procedure, surgeons had to remove a piece of the dura tissue that lines the spinal cord, "which made it very hard for her to heal post-op," Green-Murphy says.
The leak caused swelling, headaches and dizziness. "It just makes you feel miserable. It takes all of your energy away," Green-Murphy says. "She could hardly stand to move (because) she had pain all the time."
Perez had to go back into surgery a week later to get a shunt placed, which helped drain the spinal fluid into her abdomen and maintain the correct level of pressure within the brain, Green-Murphy explains.
The strength of family and faith
Throughout her ordeal, Perez stayed remarkably calm and didn't want people to worry about her. When she first got the diagnosis, "yeah, I went down a little bit," she tells TODAY.com. But she did her best not to let it get to her "because I know (my mom) and how she gets worried about us," she says.
Perez recalls telling people, "It's OK, I'm alive. You don't have to worry about it. I'm still fighting for my life, no matter what."
Today, Perez is a normal 18-year-old college student. And "it's like nothing happened to her," Toscano says. "It doesn't even seem like she had a big surgery or like we almost thought she was going to die on us."
Looking back, Perez has come quite a long way, Green-Murphy says. She had to miss out on school and normal teenage life while healing from surgery. And, for a while, Perez could barely walk. Her recovery involved a lot of hard work, including physical therapy.
"She had used a wheelchair because she was so dizzy and weak," Green-Murphy recalls. "Now when she walks down the hall, she comes in smiling and gives me a big hug."
So what kept Perez going? The support of her family and their shared faith, she says. "Have faith that everything will be all right," Toscano says. "And the stronger you are, the stronger your family will get. And this will all pass."
This article was originally published on TODAY.com