Spina bifida is a birth defect that occurs when the spine and spinal cord do not form properly, causing physical and intellectual disabilities from mild to severe. There is no cure: the nerve tissue that is damaged cannot be repaired, nor can function be restored to the damaged nerves. But that hasn’t stopped Victoria Caetano, a brave and determined senior at Rumson-Fair Haven Regional High School.
She has a benign tumor on her lower spine that she says has “strangled” her nerves and spinal cord, affecting the access points of messages that are relayed to the brain and other internal organs. As a result, Victoria cannot feel the back of her right leg.
Yet, “I was super lucky,” she says. “There are a lot of parents that don’t find (the tumor) until it’s too late. The majority of kids that have spina bifida can’t walk. Some can’t talk, or have control over certain functions of their bodies.
“Doctors call spina bifida ‘the snowflake disease’ because no people have the same case. Doctors have said to me ‘Wow, you can talk to us?’ Or ‘Wow, you can walk?’”
Victoria’s tumor can never be completely removed — paralysis would result if her her spinal cord were to be damaged in the attempt. Rather, surgeons carefully “shave” the areas of the tumor affecting her nerves.
Victoria says she “pretends” to live a normal teenage lifestyle — she runs track and cross-country, leads her school’s Fellowship of Christian Athletes club, is involved in other clubs, babysits, and works part-time at Woody’s Ocean Grille in Sea Bright. She starts her day “by taking a handful of pills.”
Her other aspirations are going to college and becoming a neurosurgeon. “I don’t see myself doing anything else. I grew up in hospitals; I grew up at doctors appointments. I’ve asked to be rolled into surgeries without the medication that makes you drowsy — I wanted to see everything and look at all the equipment!”
She says she first met someone else with her diagnosis late last year. And one of her neurosurgeon’s fellow patients Hackensack University Medical Center is Alyssa Carfi of Hawthorne, founder of the Brave Minds Project, who honored her in April. In a subsequent interview, Carfi said, “I am so glad we (honored) Victoria — one of the first things she said to me was ‘I have always dreamed about using what has happened to me to help others.’”
“I wish to be able to help children the way my doctors helped me,” Victoria says. “I want to be standing in that operating room, scrubbed in, with a scalpel in one hand, a tool in another, and fix people!”
A GoFundMe page has been set up to help with Victoria Caetano’s excess medical expenses.
She will also be honored at Meadow Ridge Park on Ridge Road in Rumson on June 29. For more info, visit Victoria-Strong.com.