By Joe Roberts @Joerobertsjourno
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Videographer / director: Michael Cimpher
Producer: Joe Roberts, Kim Nguyen
Editor: Ethan Edwards
Brianna Worden, of Upstate New York, was diagnosed with Neurofibromatosis (NF) Type One at two months, which means her entire left side from the neck down is covered in tumours – both inside and out.
The 22-year-old, who loves to sing, has undergone 10 procedures in her life already, having to learn to walk again at eight years old and even learning to speak again after a particularly difficult surgery.
Brianna told Barcroft TV: “It's just an everyday battle that I face. A lot of my childhood was spent in hospitals, kind of like in movies when you're looking at the child looking out the window looking at everyone else having fun.”
Despite some truly harrowing experiences growing up, Brianna has remained consistently positive throughout, overcoming every setback, and even getting her Bachelor’s degree in Psychology.
Mum, Janna Walter, said: “Brianna's personality is like sunshine. She's always positive. She has challenges for sure. However, she doesn't let those challenges get in her way.
”I've been told by a variety of different doctors at different times in her life, ‘she'll be lucky if she makes it to age seven’ or ‘she'll be lucky if she makes it to age 15, she'll be lucky if she makes it age 20’.
“She's still really strong. She's a fighter, she's amazing, and we're really glad she's still with us.”
In her teens, Brianna even entered beauty pageants, eventually winning Miss Teen New York in 2013.
She said: “Although NF know causes a lot of deformities, I wanted to break the stereotype of pageantry because with the pageants it's not just going on stage and looking pretty, you have a platform.
“So, I decided ‘why not use NF?’ because I noticed when you have a crown on your head or something sparkly, it's kind of like having a megaphone.”
Using her time in the spotlight to speak openly about her condition allowed Brianna to educate others on NF, which has caused her an unprecedented amount of physical problems.
The condition is most visible on Brianna’s left arm, where she has had three ‘debulking’ operations to reduce the tumours’ mass.
Unfortunately, each time the doctors removed the three pounds of tumour necessary, it has grown back. Now, the skin on her arm has become incredibly thin, making further surgery impossible.
She is currently using a clinical trial drug alongside chemotherapy to try to shrink her tumours, but NF can cause more issues, including high blood pressure, blindness, deafness, hypertension, and a whole slew of other medical challenges.
And as if that wasn’t enough, Brianna found out in high school that she also had cancer, during a particularly challenging cheerleading practice.
“I lifted my left arm to do a jump and my shoulder completely dislocated,” she explained. “My shoulder actually went right into my chest.”
After having a PET scan, a new tumour was identified in Brianna’s chest and the then high school student learned she was in the ten percent of NF patients who also develop cancer.
“There's not really a treatment that you can do,” she continued. “You can have radiation but with radiation it makes my Neurofibromatosis grow.
“So I just said ‘you know what, we're going to remove it and whatever happens is going to happen.’”
Since then, Brianna has had an ongoing battle with cancer, with new tumours developing after the initial one was removed.
A particularly painful surgery to remove the new tumours involved the doctors having to go through Brianna’s throat.
“When they removed it, I woke up and I couldn't talk,” said Brianna. “What happened was the stress of the surgery and the swelling and the intubation caused my left vocal cord to be paralysed.
“They did an exam where they stick a camera down my nose and into my throat and they said, "You may never be able to talk or eat normally again, and you won't be able to sing.
“Singing is my passion so my heart just broke. Instantly I was depressed.”
Learning sign language was off the table due to her NF meaning she couldn’t use her left arm normally, so Brianna was left with writing things down to communicate.
Despite feeling like her “world was slowly caving in,” Brianna shocked doctors in the following months by overcoming these seemingly insurmountable odds.
She said: “I had to do six months of speech therapy and they don't know how, but I can now talk. I can eat solid foods and I can sing.”
Brianna described the moment her voice came back: “I was trying to yell over my dog to talk to my brother because no one could really hear me. I had a very squeaky voice.
“There was a little ‘click’ that we heard and then I just had my voice, simple as that. Doctors don't really know how.”
On top of having to tackle these various medical issues, Brianna’s remarkable journey hasn’t been without negativity and judgement from others.
“With NF there's a lot of bullying involved,” she said. “It’s funny, it's not really from people my age or children, it's actually a lot of adults.
“The issue is, if I wear makeup, I look too healthy. If I don't wear makeup, I look too pale. So I'll have people say, ‘Are you really sick?’
“I’ve had people tell me I had MRSA. I’ve had people tell me I have Ebola. It's just kind of crazy, but I don't care.
“If I hear them say something negative towards me it does hurt but what I try to do is always be like ‘hey, would you like to know more about it?’ Because I'm not contagious, it's tumours."
This positive outlook extends to everything Brianna does, including her YouTube videos, where she sings and tries to educate others about her condition, as well as her advocacy work.
She and her mum are even writing a stage show that tells the story of their shared journey.
Janna said: “The amount of pride I have equals the amount of love and it's never ending. Just when I think that Brianna has hit her plateau of what more can she do to shine, she does something else that blows me away.”
At a recent fundraiser for Brianna’s current treatment, the young advocate showed exactly the kind of resilient and positive spirit her mum is so proud of.
During a speech thanking the attendees, she said: "I promise you I will never give up my fight for NF. I will always continue to fight for my life but also fight for the lives of other NF patients to help find a cure.”
“We don’t know how long I have with NF but I am going to rock my life. I am going to live it with the people who I love most.”