Hello my name's Bea.
Welcome to my world.
This is my family.
This is a picture that my sister Maddy drew.
She's away at camp at the moment.
It's called The Underwater Mellon Man.
This is my room.
This is one of my toy's called Lightening.
I like to read lots of books.
Coraline is my best because she is very strong and brave.
In the last four years, I feel better now.
I can be free to be me and I can be myself.
I can be Bea.
I'm going to show you my most interesting thing.
I have a thing called Arthogryposis.
It means that my feet and ankles were twisted.
This is what I call the inside house and these are mum's plants.
I have Arthogryposis and it's in my hands too.
But I get around really good with my hands as well.
Arthogryposis is a condition that affects the joints.
And it starts to make it's presence known in utero.
Bea has amazingly gotten away with only have her hands and feet affected.
Usually it's a whole combination of body parts.
Feet, hands, elbows, shoulders, hips and knees.
And sometimes curvature of the spine.
So limited movement of the arms, possibly internally rotated shoulders.
Bea's the only one I've come across that's only feet and hands.
Bea: And here is the Tarzan swing.
Before my operation, I had no stability in my feet.
Or any balance.
And it would take a long time to do running or canter, or gallop.
Or whatever I had to do I couldn't do.
When I look back at footage of Bea walking around and playing outside,
I remember that feeling that I had...
It was such a horrible feeling watching her move,
and thinking about how painful and wrong it looked
and must feel for her body.
When I was four, I couldn't walk as well as other people could.
And people use to say that my feet were like jelly beans.
They thought that we could get new legs and new feet.
Her feet aren't functional. They cause her pain.
They don't look very comfortable at all to walk on.
And they're damaging the rest of her body.
Because she has no bend in her foot to get herself forward,
she twists her hips and so she sashays on tiptoes.
Recently she's started to get pain in her hip.
If she's on her feet a lot during the day...
then at night it will come back with a vengeance and she'll be really sore.
And she will have broken sleep.
When she was seven days old...
an orthopaedic surgeon put her in full leg casts.
When she was four months old, she had a tendon release surgery.
Then immediately after that she went into DB boots.
It was really painful because I had to push her feet down into right angle.
So there was lots of screaming.
When she was two, she had a huge surgery,
which was a total foot reconstruction on both sides.
They took the cast off and she couldn't even place her foot in my hand.
It was so sensitive.
And five minutes later after that appointment we were sent to orthotics
to force her feet back in those boots.
And so we would put them on at 9pm at night,
she'd scream in pain until about 5am in the morning.
Then we'd take them off and then she's sleep for four hours.
And then she would have a four hour sleep in the afternoon.
And at 9pm we'd put them on again and there'd be screaming.
So when she was finally able to put weight on them and they were flat.
It was for three weeks that she was able to wear shoes
and they were flat and then they started to go back again.
After four years of struggling with surgeries and her pain,
also realising that she'll probably end up with badly damaged hips,
having curvature of the spine, benig in a wheelchair,
being really inactive and being an angry person who's always in pain.
We just thought that surely amputation would be a better option.
Bea: You get them on like this.
I really like them because they look cool with my skirt.
Let's play hide and seek.
It's a big decision to make...
but it's a big decision to decide to have a child.
You have to make a decision and this is the decision that we're deciding to make.
You'd be inhuman to feel like it was easy and to not have doubts.
By doing the amputation, hopefully it's a one off thing,
and then she gets the prosthetics and then she has a great childhood.
She'll be more able bodied with prosthetics than without.
Have a good day at school.
See ya.
Love you.
Love you too.
Bye dad.
Socially, I think that Bea sometimes struggles...
because all through kindy and through that time of her life...
she was always in pain.
So to play freely it's a distracting pain.
Bea: At school I feel confidant and not confidant at the same time.
Like I'm in between.
In school there's this friend called Kimberly,
and she makes me so happy.
Good morning Bea.
Have a lovely day.
Kimberly is my best friend that I can remember.
Also are Makayla and Jasmine.
Kimberly and Bea met when Kimberly came into class...
and her desk was put facing Bea's desk.
Bea said that they looked at each other...
and Bea saw Kimberly's hearing aides...
and Kimberly looked at Bea's feet.
And then Kimberly said, "We're made for each other."
Kimberly is very protective of Bea,
and sometimes she comes out with really wonderful things like...
"You can play with me but you just be yourself and do what you want to do."
Things like that.
Bea: In the playground when I play with my friends
I feel like a team, like in the group.
And I feel like I can do anything with them.
Her strength is nothing I've ever seen before in an adult or a child.
She biked to school...
she was determined to bike to school when she was six.
And she was sweating and her face was really serious.
And she was riding this little bike with trainer wheels
and it was chunky concrete.
And I was saying to her, "Are you alright?"
And she was just saying, "I'm great."
And she biked the whole way to school.
She would have been so sore and awkward...
but she refused to stop.
The thing that I like about Napier and Hawkes Bay
is that there are heaps of shops that you can go shopping in.
That's my favourite part.
Inflatable World is my favourite place.
I've been there it's very fun.
But I hate it when I have to race against my friend to climb up.
I always lose.
Same.
Having no feet feels like...
like I have no things to stable me up.
Because I always wobbly a bit when I stand still.
So I can't be stable.
It feels sad doesn't it.
Hmmm.
But it also feels exciting because I run quite fast.
Yeah you do.
Kimberly: My flavour is boysenberry. What's yours?
Bea: My flavour is Mute, it's chocolate chip and it's a double scoop!
And cookies and cream.
Yum it tastes delicious.
What are you going to be when you grow up?
I am going to be hairdresser.
I think I'm going to be a fashion designer.
Like design clothes and sell them.
We can work together.
Yeah I could do the hair and you do fashion.
Fashion for fashion.
(Laughs)
Bea: When I was four, my mum told me a story
to help me understand what was going to happen to my legs.
Are you going to be the girl in the story?
Yeah.
Once upon a time there was a big giant man.
And he made everything.
He made all the cars, all the plants and the pets and all of the people.
One day he was in the middle of making a little girl...
called Bea.
Called Bea and he heard a really loud banging noise outside.
He quickly went and rushed outside.
Then the little girl thought she'd like to get up
and look at what happened outside too.
And when she got up and tried to walk she discovered
that he hadn't finished her off properly and she couldn't walk properly.
And then one day her mum and dad said to her...
"Guess what?"
"The doctor said that he can take off your feet and get new ones."
Build you knew ones.
New ones.
They went to the hospital and the little girl had some medicine
and then she fell asleep.
When she woke up she looked under the blankets
there were no feet at the end of her legs.
Do you know what she thought then?
What?
She felt a little bit worried
and then she remembered what that meant.
That meant that she was getting new feet.
I don't think that there's any question that anyone could answer,
or anything anyone could say that would make me feel 100% fine about it.
But I think there would be something unusual about you...
if you could feel 100% fine about someone cutting off your child's feet.
For some people, amputating her feet may seem like an incredibly dramatic way
of coping with the situation when they may not see the alternative as being so bad.
Hello Grandpa.
I'll leave you in two minutes when you go hunting for leopards.
Goodbye.
Arggh!
These are my stumps.
And I got new feet.
Amazingly the difference in her, not just physically but psychologically
from the minute they were gone has been incredible.
Two days after she's come out from under general and having her feet amputated.
I lifted the covers up and there were no feet there
and there was blood on the plaster cast.
And I felt a bit shaky about it.
Her feet were a huge part of my life.
I use to fall asleep holding them.
Every night I'd be on my knees, holding her feet.
They represented her to me and they were gone.
She lifted the blankets up and she looked at me.
And I was so nervous and really aware of how I was going to respond to her
and where that would lead in her mind.
And she looked at me and she said, "Mum I've got no feet!"
It was like Christmas.
Really soon you're going to be able to run and dance like that.
I'm going to get my new feet!
It was really moving the first time I saw Bea walk on legs
because I hadn't imagined seeing her with feet.
It was really strange and really amazing.
And I think for her it was amazing as well.
First we put on a sock and that always goes on first.
And then a liner that's soft and spongey.
That will slide all the way in.
Look at you!
Try and take a few steps.
Have a walk Bea.
I'm going to walk the whole way over there.
I'm not puffed out.
I can't believe how tall she is.
It's way more overwhelming than I thought it would be.
Way more.
Because she's never ever walked like that.
It's better.
She's never had feet that were that shape.
I think she really enjoys pushing herself.
So having prosthetics she pushes herself in different ways.
She would practice walking uphill using just the tippy toes of the feet.
And trusting that even though they weren't her feet they would still carry her.
So she could do more.
The horse riding for Bea has been huge.
It's not just the riding of the horse,
but being able to have a relationship with animals in general.
Hi welcome back.
Are you ready to ride?
Yes.
Dyon, the riding instructor has become a really special person to Bea.
The relationship that they have and the constantly evident belief
that Dyon has in Bea's ability.
You've cantered on three horses now eh?
Yes.
Johnty, Georgie... and Fred.
At Riding for the Disabled we have a huge range of people
that come to us with a range of issues.
Bea's realised that this is something she can do
the same as anybody else.
It doesn't depend on having feet, she doesn't need them
and she's not at any disadvantage.
Bea's relationship with the horses is really good.
She's very compassionate and thinks a lot about what her horses are enjoying.
Fred hasn't had any work today you're his first rider.
Do you think he's looking forward to it?
Yes.
So go through this gap.
Come on.
Get him into a nicer walk than that Bea.
When I'm riding a horse, I feel nervous, free and happy.
Riding a horse is hard for me...
because my legs aren't stable enough to balance on the horse.
When I kick I want the horse to realize that I want to walk.
And whenever I kick, it canters.
A while ago she was riding in a saddle,
but she found it really difficult because it didn't work with the stirrups.
And riding with her prosthetic legs didn't work for her either
because she couldn't feel what she was doing with them.
So a bare back pad is a better option for her.
They're good for developing their seat and their core strength and balance,
which Bea will definitely need.
(Sings)
Bea: Thane has been my friend for two years.
And he's made me a painting of a bird and a jug
and now he's made me a song.
(Sings)
Amazingly young lady called Bea
was an eight year old twin amputee.
She said I don't need feet to make me complete.
I can still kick your ass with my knee.
Bea: When I was dancing with Thane and singing the song with him
I felt free and I feel like I can do anything
and I'm ready to dance.
Thane: Try putting the ball down and spinning as fast as you can.
(Sings)
Kicking that ass
Now without the ball.
Just you spinning on your feet.
Kicking that ass
Kicking that ass.
A personal thing that I want to do is dance.
And I really feel like I can do it.
Nothing is going to stop me.
There are two things that Bea does
where I get to see her free of any worry.
One of them is when she's in the pool swimming.
The other one is when we have music playing
and we're dancing together in the lounge.
But she also has that desire to perform.
Hi Bea how are you?
Good.
My name's Leanne nice to meet you.
This is Corrine, studio director.
And Madison, senior dancer and Corrine's daughter.
We're going to start with some bar work.
Come a little closer and stand up nice and tall.
Take our right foot and take it forward and then bring it back.
I really want to see how far she'll go
and what she can do with this dancing
because she's got the determination physically
and she can really focus on pushing herself.
Bring your right leg up
and when it lowers down squeeze your stomach nice and tight.
Bend your right leg.
Down, 5, 6, 7, 8.
It's been a really good experience having been to the studio today
and looking at what she's capable of.
She's a very confident young lady.
We would love to help her grow in her dance
and her enjoyment of movement.
Two steps together out to the side.
So right, together and finding that centre.
Right, together, swing and clap and swing and clap.
Bea: One day I would like to be doing tap dancing.
And I could be in a concert and everybody would look at me.
Dancing it feels like I'm free and I can do anything with anyone.
I wish Kimberly could see me right now.
I have no doubt whatsoever that Bea will grow up to be
a really strong, confident and powerful woman.
And do whatever she wants.
You know what I really want to do now?
What?
I want to hug you.
Me too.
Where are we going to get our ice cream?
There.
Yeah!!
Ice cream!!