By Joe Roberts @jrobertsjourno
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Videographer / director: Susan Tan
Producer: Joe Roberts, Ruby Coote
Editor: Beth Angus
Vanessa Cornelio, 25, was born with Neurofibromatosis (NF), a genetic condition which causes tumours to grow on her nervous system, as well as Scoliosis and Kyphosis which cause sideways and outward curvature of her spine.
Her son, Daniel Jr., was also born with NF and Vanessa says she has finally decided to speak out in the hope it will one day inspire him.
Vanessa, of Glendale, Arizona, told Barcroft TV: “It’s hard to have what I have on my body and be okay because women around the world work out, they have perfect bodies, they have everything.
“But my son made me want to share my story, because I don't want my son to see his mother depressed.
“I don't want him to see me not doing anything because of what I have. I don't want him to feel anything but happiness and positivity.”
Vanessa has faced incredible odds throughout her life, having been born with NF before developing spinal curvature and being diagnosed with Kyphosis and Scoliosis at age four.
She has since been through around 15 operations in her lifetime – around five to remove tumours caused by NF, and the rest to help straighten her spine with metal rods.
“Each condition has affected me a little different.” said Vanessa. “The pain is just there. I don’t know how to describe it. Back ache, hip ache, shoulder pain neck pain – there is just a lot of pain.”
Even now, after going through so much, Vanessa is constantly in the under threat from her own conditions.
“I could have my spine collapse on my lungs, or I could lose the feeling in my legs, or I could have tumours,” she said.
Vanessa’s NF begun with patches on her stomach that looked like birth marks, before developing into tumours as she got older.
“My physical appearance was different by the time I was 12 or 13,” she explained. “And not in the way that a normal female’s body should be.
“I didn’t have the boobs, I didn’t have the butt, I didn’t have what everyone was going through at that age. I was growing tumours on my stomach. I was having surgeries on my back.
“I would be younger and people would ask me if I was pregnant because I had the stomach tumours, and that shut me down a lot because I was just fat in my stomach.”
And while the NF has made life very difficult for Vanessa, the Kyphosis and Scoliosis have proved to be just as, if not more of a burden.
Scoliosis causes her spine to curve sideways, while Kyphosis means the spine also curves outwards, causing a hunch.
Due to these conditions, Vanessa had to undergo her first surgery at the age of four and half, when doctors spent 10 hours correcting the curvature in her spine.
Her father, Michael, who also has NF, recalled Vanessa’s recovery: “She was on her stomach so her lips were really swollen and we were in the hallway on the way to recovery room, and I said Vanessa how are you doing?
“And she goes ‘fine daddy’, because I told her no matter what happens, put your thumbs up and say that you are doing good, and she did that and that made her a lot stronger.”
But this first operation, where Vanessa says she was “cut from the back of her neck all the way down to her tailbone,” would be just the beginning of her spine troubles.
In 2007, when Vanessa was 14 years old, a doctor noticed during a checkup that part of the rod holding her spine together had separated from the vertebrae.
The young teen underwent a further operation to fix this, but just four weeks later, during basketball practice, Vanessa leaned forward to take a drink of water and “heard a pop”.
She thought nothing of it, but over the next few weeks began to lose feeling in her legs and went to the doctor, who told her that the rod in her back had actually snapped.
The operation to correct this left Vanessa unable to sit upright at all, and she had to undergo another surgery with a different doctor, who finally managed to fix the issue.
Vanessa then went through months of physical therapy to learn to work again.
Mum, Lucinda, said: “At one point she didn’t think she was going to be able to walk. At one point her legs gave out and that was the most frightening.”
But Vanessa stunned doctors and family by persevering through therapy and eventually gaining the use of her legs again.
She has not had surgery since, but still doesn’t have 100 percent feeling in her legs and lives with constant back ache and and body pain.
Still, she hasn’t let this stop her from living her life. The Arizona-native met her now-fiancé, Daniel Robles, while working in a restaurant almost four years ago, and has benefitted from his unwavering support ever since.
Daniel said: “Vanessa didn’t really tell me about her conditions [at first]… eventually she ended up showing me.
“And all my life I grew up in special ed, with people who were disabled and I was in classes all through high school. So that was normal to me. That was something I’d seen all my life.
“So when I saw her I saw just another girl. And then ended up falling in love with her.”
Vanessa added: “Daniel loves me for the way I am – for how I am, and he wants me to do whatever will make me happy and I really love that.
“I never had that. Never thought I was going to have anyone like him in my life.”
The couple gave birth to their son, Daniel Jr., two years ago, but it was a difficult time for both of them.
Vanessa said: “The hardest moment for my condition was my pregnancy, because I was worried all the time that I wouldn’t be able to support carrying a child.
“I was worried that I was going to hurt my baby or my spine was going to snap or one of my rods was going to pop.”
But Daniel Jr. was born without any of those things happening, though doctors did diagnose him with NF at birth.
“I felt scared,” said Vanessa. “Those tumours can grow on your brain. Those tumours can grow on your feet. Those tumours can grow on your stomach.
“I still don't know what he can get as he gets older but I know what to look out for. I know what to watch for. I am doing all that I can to make sure he is ok.”
While Vanessa can’t play with her son or carry him as much as someone without her condition can, she is doing everything to ensure he has a fulfilling life, despite becoming depressed due to her limitations.
She added: “It wasn’t until I had my son and Daniel came into my life for me to realise who I am and accept myself.
“Daniel accepts me, my son accepts me and that’s all that really matters.”
The couple have enrolled Daniel Jr. in various therapies to help him progress while living with his condition, and the two-year-old has already inspired his mother to speak out about her journey.
Vanessa recently started a YouTube channel where she documents her life, and recently, for the first time ever, posted a picture on her social media where her tumours were visible.
She also decided to have a boudoir photo shoot with her fiancé, which she says helped her start her YouTube channel and come out of her shell.
“I did a photo shoot recently because I wanted to open up more about myself and I didn’t really know how to do it so I did, a boudoir photoshoot.
“I wanted [the photographer] to capture me naked in a sense – my spine, my back, my tumours, everything.
“It’s just another way to create memories and I feel like I had such a hard life and I have never talked about it.
“I have never opened up about my condition, I never voiced anything and I have been literally in this room my whole life.
“I want to reach out and hopefully become the voice for the ones that are scared because I can tell you I was completely scared.
“Now I just don’t care anymore because I have this condition. I have what I have and I have to accept it.
“And I have to make sure that my son accepts himself and just has a good mindset and remains positive because I have been negative my whole life and I’m done being negative.”