Have you ever wondered what life would be like to live with missing limbs?
Well I do and it’s not as bad as it may seem.
Sure I have my challenges and days when I get down about it, this site is to tell you a bit about me and how I deal with those challenges and to help others to try and see the positives that can come out of being a little bit different.
What will you find here?
This website is to tell you more about me, Baylee, my prosthetics – especially a new one I’ve just made with Does Liverpool and Reach. I’m part of an exhibition at FACT Liverpool and I talk about myself and my prosthetics at special events.
Who am I?
My name is Baylee & this is my brother Koby he Rocks !!
I’m an average 11 year old, in the way any 11 is average! I love singing and dancing.
When you first meet me you might not notice what’s different. I hide it well. I was born with what’s called congenital limb abnormalities.
My limbs are different. My right hand has a thumb and then my next three fingers are short and stop before the knuckle, my little pinkie is smaller and curves slightly.
Also my feet are a little different, my left foot is missing just past my ankle and my right foot is missing full toes.
I had my first prosthetics when I was two. I know a lot about prosthetics. I know what works and what’s comfortable. Clatterbridge Limb Centre gave my silicon ones which are the same colour and look like regular feet. I can even paint my nails.
Before I was born when I was in my mummy’s tummy, the doctors saw that I had a missing left foot and a different looking right one. My mum says at first the nurse wasn’t very nice and just said baby has no feet and left them waiting for ages to speak to a doctor. After that the doctors spent a lot of time scanning my mum and were a lot nicer. What they did say was that I would not be a dancer or a runner and may have to have my leg amputated if it didn’t work.
5 months later I was born at hospital, Mum and Dad got another further surprise, my hand was smaller and my fingers hadn’t formed properly and when I was given my first feed it came straight out of my nose due to me having a cleft palette.
Oromandibular limb hypogenesis syndrome
The doctors & genetics people later gave me the diagnosis of Oromandibular limb hypogenesis syndrome which basically means I have a small mouth and hands and feet are formed differently. The reason for my Hand and feet has been put down to Amniotic Bands – which means that blood vessels wrapped around those parts when I was in my mum’s tummy and stopped the parts of my body growing.
So that’s the technical bit, now how did it affect me?
My Mum and Dad knew that my Disability would not stop me, from an early age I was very determined along with them. My Mum, who is a dancer, started a special dance school for me and my toddler friends to learn how to dance it’s called Dancing Tots.
I started walking very early even without prosthetics, I surprised everyone – more so when I started to run and dance like they said I wouldn’t.
I started school and had some problems at first whilst the other kids got used to the fact that I was different. Most were fine once I had explained that I was born like this and just accepted me as I am.
I did get fed up though as life went on and I had to deal with more and more people pointing and staring. So much so that I decided with my family to stand up and try to stop this.
Don’t Point & Stare
I wrote a talk which I gave with the help of my younger brother Koby to my whole school of 200+ children and teachers. The talk was to tell everyone not to point and stare but instead to come and ask, start a conversation and find out
I gave my first talk to my school talking about prosthetics when I was 9. I wanted to get the message out that you shouldn’t look and stare at people who are different.
You can see the talk here .(sorry about the video quality)…. (work in progress)
The talk went down really well and I had a lot of questions from other children which was great.
I belong to a Charity called Reach which is here to help Children with Upper Limb Deficiency. They have an annual award – The Sue Stokes Award for the child that has done a lot to promote and help.
To my shock and surprise last year I won the award at the AGM.
It was at there that my Dad heard about the 3D printed prosthetic hands that were being designed by a group of people at www.enablingthefuture.org
You can read about that here ….
May 31, 2015 at 10:12 am
Hi Baylee I love, love your blog! You are one amazing young lady, no wonder your Grandad & Debbie (and all your family) are so very proud of you.
Keep up the great work!!!
Elaine W xxx
June 1, 2015 at 1:41 am
Dear Baylee – it is great to read all about you on your blog. I have been close friends with your Grandad and Debbie for such a long time, and so I am really pleased that they have told me about your website. It’s really good to read about what you are up to, and winning the Sue Stokes award last year tells me that you must be a very special person. Keep on dancing, Baylee!
June 2, 2015 at 9:58 am
HI Baylee- I love your blog too! You are inspirational and it’s wonderful reading how a new hand helps. My daughter, Lara, is currently writing a blog about her experiences getting a new hand built – she’s one handed too. Her school is running a “build a hand” day next week and we have some other children coming along to get new hands (hopefully). As everyone is a little different this is a bit trickier than we thought it would be but we hope the day will be a success and that Lara and seven others will get a new hand by the end of it. On a more “grown up” note – we are having a bit of trouble printing hands for the children who have a thumb but no fingers and I wondered if you could ask your dad to call me or email me to see if he can help at all? Keep going with the good blog – it’s also great that you did a talk at school saying how it feels to be you – I think that’s a wonderful idea.
June 6, 2015 at 10:13 pm
It was so nice to meet you and your lovely family at Does Liverpool today. Well done for all that you have achieved so far and keep dancing :-D. See you in August, Annette
November 16, 2015 at 5:05 pm
Just seen you give your presentation at TSA – you were out-of-the-ballpark brilliant! Just been telling my colleague who runs our organisation’s conference programme, as I think we’d love to get you to speak at one of our events, if you’re interested? Well done – best presentation Ive seen for a long time!
LikeLiked by 1 person
November 16, 2015 at 9:30 pm
Thanks for your very kind comments. We are interested in your idea, can you email your contact details to firstname.lastname@example.org
Best wishes x