Brianna: When you look at it, it is scary, but I don't care.
I flash it, I look at them and Okay, would you like to
know more about it because I'm not contagious.
It's tumours.
I wanted to break the stereotype of pageantry.
So I have to put aquaphor on my left arm.
I do this every day, typically right after I shower,
then just for my sake, I do it in the middle of the day
and then again before bed.
My name is Brianna Warden, I'm 22 years old,
I have neurofibromatosis type one and with this it can cause
tumours to grow everywhere in the body or on one side.
Most of my tumours grow on my entire left side
besides my left leg, so you could see a lot in my left arm.
It starts from my neck. So around my spine, it goes into my chest
wall area around my kidneys.
And with NF it's not just tumours.
This is a titanium rod. So my spine is all metal and now It's all the way up.
Growing up my childhood was as normal as it could be.
I did choir, I tried to do band, but a lot of my childhood was spent in hospitals
like kind of in those movies. You're looking at the child looking out the window
looking everyone else having fun.
I had a PET scan on accident I wasn't supposed to.
And they say you have a tumor that's about a dime size,
maybe a little bigger that lit up on the cancer scale.
We need to have a biopsy.
I saw my mom crying on her bed,
and I just looked at her I go “I've cancer don’t I?”
Janna: We found the doctors at Boston Children's Hospital
where we've been for over 20 years.
Bree has had many surgeries, spinal fusions
to correct severe curves in her spine
that would have left her paralysed.
Many tumour debulking she's had cancer three times.
Brianna: It’s on my left hand, it’s not the greatest.
But this condition affects my everyday life in a multitude of ways.
So even like getting out of bed can be a challenge
because it hurts my joints
and then I have days where my tumours just are so inflamed.
Janna: I don't think she's had a day in her life that she has not had pain.
Brianna: So I'm going to try to find a sweater that I like to wear.
I've had people tell me I had MRSA.
I've had people tell me I have Ebola, but I don't care.
I flash it. I look at them and I hear them say something
negative towards me. Yeah, it does hurt.
But what I try to do is always like a person like, hey,
would you like to know more about it?
Because this is what it really is. I'm not contagious it’s tumours.
So although NF, you know, causes a lot of deformities and stuff like that
I've wanted to break the stereotype of pageantry.
It's not just going on stage and looking pretty.
You have to have a platform and you have to speak to judges.
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 that megaphone.
In 2013, I won Miss Teen New York my second try.
I can't even describe the feeling like it was cliche, I cried.
It's just an overwhelmed like feeling of joy.
It's my favourite dress, I will always have it.
And it showed all of my scars and that's what made me feel great.
So this fundraiser today is really just helping out
my family and of course me more so like, funds for going back to Boston.
And you know, we have to pay for my medications because insurance don't cover
all of your medications you still have to pay.
So it's really just to help us and so I can receive the treatment I need.
I'm very excited. It'll be nice to see some of my family and friends.
Actually I haven't seen them since before I started chemo.
It's been almost four weeks about maybe three.
A lot of people are asking how I'm doing
and wanting to see if my arm has changed.
Janna: Many of you know Brianna,
some of you are new to our family
and once you're part of our family and you're in this room,
you're part of her family, she's 22.
So many of you know that NF causes tumours,
severe pain, sorry.
Disfigurement, cancer, bone abnormalities, learning disabilities,
possible blindness, deafness and death.
For Brianna, she lives with pain.
Brianna: So I just wanted to say that I promise you I will never give up my fight
with NF. I will always continue to not only fight for my life,
but to fight for the lives of other NF patients to help find a cure.
So thank you all so so much.
I hope you enjoy the rest of your evening.
I definitely think the fundraiser went well,
Like better than I expected.
Janna: Just when I think that she has hit her plateau,
of what more can she do in her life to just shine?
She does something else that blows me away or says something.
Brianna: With NF, it's so depressing at times
and I'm always trying to be positive but lately it's been hard.
And just seeing how many people love me It shows that,
I'm not alone and that I do have people that are going to support me.
Of course we don't know how long I have with NF.
My doctors have never told me I have a short time but I'm going to rock my life.
I'm going to live it with the people I love most.