World Cerebral palsy awareness day.
Updated: Oct 7, 2018
So, should Cerebral Palsy hold you back? Look at our boy and get your answer.imate dream to be a Para-Olympic swimmer - watch out Paris 2024!t of other issues; Epilepsy, Autism plus many learning disabilities.
Today is World Cerebral Palsy Day.
And this is the launch of our #cp awareness campaign ‘Talent with..’
The campaign, ‘Talent With’, aims to showcase the #diverse personalities and passions of a broad cross-section of people with cerebral palsy. Zebedee commissioned 13 different photographers to shoot portraits of 24 models, all of whom have cerebral palsy. The featured models come from a variety of backgrounds and have diverse interests, ranging from four-year-old train enthusiast, Iyass Baba, through to world number twelve wheelchair tennis player, James Shaw.
World Cerebral Palsy Day is a movement of people with cerebral palsy and their families, and the organisations that support them, in more than 65 countries. Its vision is to ensure that children and adults with cerebral palsy have the same rights, access and opportunities as everyone else.
Cerebral palsy is a permanent disability that affects movement. Usually caused by an injury to the brain before, during or after birth, its impact can range from a weakness in one hand, to almost a complete lack of voluntary movement.
Across the world, there are 17 million people living with cerebral palsy, while another 350 million people are closely connected to a child or adult with the condition. In the UK, cerebral palsy affects about one in every 400 children.
The campaign is part of Zebedee’s ongoing drive to redefine perceptions of beauty, disability and diversity. It plans to run further ‘Talent With’ campaigns in future as a way to highlight and raise awareness about different disabilities and conditions.
Hi I’m Bailey i love been a Zebedee model it's probably one of best things I've done and having CP never thought I would ever get this opportunity it gave me some much confidence and proved to myself you can achieve and have a go at everything I don't let my disability hold me back I am just loving my life as a 16-year-old so CP Awareness day is important to me so believe and achieve loving life posing & pouting!
Alfie Woods -
Our children aren’t disabled. Society and its infra-structure disables our children. But trust me –it’s changing. 19 years ago we were overwhelmed by the barriers. Doorways weren’t wide enough, ramped access wasn’t available, toilets weren’t big enough. But an army of people began to say-‘this isn’t good enough’ and things began to change. You, as a parent, are part of that change. Keep on saying ‘this isn’t good enough’ until society changes and enables all young people to be the best that they can be.
You are the expert. You know your child better than any other person on earth. You have watched every moment of their development from the point of diagnosis. We were told Alfie wouldn’t talk, walk or be continent. They were wrong. We spent the early years mourning the fact there was a life he would never have. What a waste! There were so many things we couldn’t change but what we could change was ourselves, our view on the world, our ability to find a source of never-ending patience, our ability to disagree with the specialists and it be ok to do so. You never think you will be strong enough; you will find a strength that surprises you. Our boy is now 19. It’s hard to remember the struggles-they’ve faded over time. The hopes and joys however, have increased and multiplied. We are very proud of him and all his achievements.
This is our son Christian age 3 and a half. He was stillborn and it took 23 minutes of resuscitation to start his heart and he took his first breath at 24 minutes old. Due to the lack of oxygen during this time and in the womb, he suffered widespread brain damage. As a result of this at 6 months old he was diagnosed with Cerebral Palsy and was registered severely sight impaired. Although we knew it was likely to be coming, the diagnosis being confirmed still hit us hard. The unknown future was the scariest part about it, not knowing how it would effect his future health and life. Those early months we were told lots of things he would struggle to achieve and lots of things he wouldn’t be able to do at all. We made a promise to Christian back then that we would push all those “can’ts” aside and focus on what he could do and encourage and push his development forward in every way we could. We did lots of research and joined some support groups where we met other families. We took Christian to hydrotherapy, conductive education, sure start centres, signing classes, singing classes, dancing and drama and he now even plays for a cerebral palsy football team. He has amazed us with his progress and his positive attitude and determination. Although his development is delayed he can now say a few words, sign many more words, stand holding on and walk with a frame amongst other things. These are all milestones we didn’t know if he would reach and he’s already there at just 3 years old. He is the most sociable and very affectionate little boy with the biggest smile, he has a real cheeky character and brings sunshine and joy into each day we spend together. He has recently become a model for the wonderful Zebedee management and we are so proud of him. If I could give a message to parents whose children are newly diagnosed it would be to look for and reach out to local support groups or online groups, focus on the can dos not the can’t dos, and to be patient, it may take a bit longer for your little CP Warrior to reach those milestones but that just makes it so incredibly special if and when they do achieve it.
When I was diagnosed with Cerebral Palsy at the ago of two, the doctor said "most parents break down and cry at this point" to which my parents responded "crying won't change our daughter, what can we do to help her." It is that outlook and determination in life I have carried with me ever since. Being disabled does not mean you are not able. I have a first class degree in Photojournalism , I have travelled to beautiful countries, I can drive, I have a full time job, the list goes on. My advice to anyone with CP or anyone who knows of someone with CP. 'Just be you' and the world will smile with you, and to those who don't, I just simply smile and say: "I have wobbly legs, what's your superpower?"
Images Shelley Richmond @shelley_richmond_
Dan Edge @dan_edge
World Cerebral Palsy day recognises, all the people around the world who have Cerebral Palsy each person’s CP is as individual as they are. For me that makes me someone who is a part time wheelchair user walks with sticks and affects my balance, coordination, and fine motor skill, its part of who I am but I’m also I am an Actor, Model, Pro Wrestler and Aerial Performer who also throws knives, cracks whips, goes to the gym and plays video games, fights for disability equality and the social model of disability and the rights of all Deaf and Disabled people that work in the arts. I’m one of the many people in the world with CP and we are awesome!
Image credit- @aatishphotos @catfishstudio
Introducing Dan; a 10 year old super active young man with Cerebal Palsy (Congenital left-sided Hemiplaegia). Dan's CP brings with it a host of other issues; Epilepsy, Autism plus many learning disabilities.
Shouldn't that hold you back?
Shouldnt that make you stop?
Dan is our little super hero, in his short life so far he has taught & inspired us so much......
In 2016, at Great Ormond Street Hospital, he bravely underwent major brain surgery in the hope that it would rid his little body of his awful seizures; 2 years on - we are seizure free!
In Summer 2017 Dan & his disability Team Gym Gymnastics Team became British Champions; they retained their title in 2018!
Four times a week our boy gets in the pool for speed swim training. His ultimate dream to be a Para-olympic swimmer - watch out Paris 2024!
So, should Cerebal Palsy hold you back? Look at our boy and get your answer.
"Determination has no disability."
Robert M. Hensel
Photos: - @victoriabakerphotography
Rebecca and Charlotte
Having a child with Cerebral Palsy
Being the father of twins, one of whom has cerebral palsy is heart-breaking, fantastic, frustrating, amazing, enjoyable and difficult.
I always have one twin who reminds me of what the other should be able to do which can get to you but also gives us something to aim for, helping Rebecca to do the normal things that Lottie does but just in a different way.
We go on holiday and all go in the sea, Lottie is body boarding or wave jumping and Rebecca is strapped to my back bodyboarding and wave jumping – and we are all having a fantastic time. We adapt around things so we can all do it, climbing hills, trees, cliffs etc, we explore the woods like anyone else but I may have to carry her trike in places or help push her. If there is a way to do it we’ll do our best to find it.
It is fantastic when Rebecca does new things – they can be small goals for someone else but for her to do them is a fantastic achievement. An amazing feeling for a father to see her developing – I was recently amazed at how good her writing is becoming.
Dealing with other people who have no experience of CP can be difficult because the twins are both the same, Rebecca just has some physical difficulties but people treat them so differently until we explain she is not made of china nor is she stupid – she is a hard core X games speed freak. Be careful because, just like her twin, she knows Ju-Jitsu and is happy to show you!
All the lifting and carrying, doing the physiotherapy every morning, helping her eat and dress and generally looking after her is hard work but she has a great sense of humour and every day we have a laugh, sing, make up jokes and I get to have lots of cuddles. We wrestle, I think she cheats by double teaming me with her sister but then again I cheat by tickling them both.
If she didn’t have CP life would be different/easier but I couldn’t love her or her sister any more than I already do and I honestly don’t think we’d have any more fun or play more stupid made up games.
Photographer: Matthew Holland Photography
Caitlyn Fulton @thegirlonwheels_
I was born premature at 26 weeks. The lack of oxygen at birth damaged a part of my brain (The Cerebellum) which controls muscle movements, posture and balance and I was diagnosed with Cerebral Palsy in June 2001, a month before my 1st birthday. It was a shock to my family.
When I was at primary school I could walk with a frame but as I got older I started to rely on using a wheelchair more due to my growth and the spasticity in my legs. I’ve had several operations to manage the tone because this makes my legs tight and difficult to move, the most recent operation I’ve had was in March of this year, which was to reconstruct my hip as it was coming out of joint due to the effects of my tone. The aim of the operation was to give me a better range of movement, which has been successful. The long term aim is to be able to stand again, however this a long term goal which is going to take a of rehabilitation.
I’ve always tried to remain as positive as I can be about my disability but like everyone, I have good and bad days but I’m grateful that my family support me with anything that I want to achieve in life and I never let my disability hold me back. You only get one chance in life, so make it count.
I’m currently a first year student at college studying music and when you study what you love, it feels right. Music is something that means a lot to me and I also have a stammer and not being able to talk fluently at times is very frustrating. I’m a singer and so when I sing my stammer leaves me, it’s a relief as I can really be myself and not have to worry about the lyrics, it’s a wonderful feeling.
To celebrate turning 18 this summer, I got a tattoo of a treble clef with with the CP awareness ribbon to represent my disability and my passion for music which are the 2 most meaningful things to me.
I loved doing this shoot to raise awareness of Cerebral Palsy, it was so much fun and the images are pretty powerful too!
Photos: Martin Clark’ @photomclark
Heidi Waite @heidiwaite08zebedee
Heidi was born 14 weeks early she weighed 1lb 15oz which is less than a bag of sugar. She had chronic lung disease and needed oxygen. At 4 weeks she had a PDA and had to have life saving surgery. 3 months later she was allowed to come home, she was on oxygen until the week before Christmas. Throughout her life she has had many procedures including hip surgery. Heidi has cerebral palsy and is a wheelchair user. Heidi is an amazing little character and has taken part in a Panathalon where she won for Halton at just 5 years old. She attends mainstream school which she loves and has lots of friends, she is the only wheelchair user in the school. Heidi has been on stage with her performance group and has also been an extra in the cbbc Jacqueline Wilson drama Katy. No matter what Heidi has been through she continues to grow into a happy, smart, beautiful and confident little girl.
I was born with Cerebral Palsy but when i was younger I never really felt 'different'. I went to mainstream school, all my friends were able-bodied but I just felt like I fitted in. As I was growing up I was always aware that I couldn't do as much as everybody else. I came to realise that I didn't walk the same or talk the same as those around me, but actually, l was OK with that and I still am.
Cerebral Palsy may stop me from doing some things, but it has also given me the most amazing opportunities. When I was 12 years old a CBBC television show was looking to cast a disabled character, I auditioned and I got the part. I didn't know I could be actress! I got this opportunity thanks to my Cerebral Palsy. I went on to act in other television programmes thanks to my Cerebral Palsy. I was able to apply for Zebedee Management thanks to my Cerebral Palsy.
I would never change my disability, of course I find things harder, but I am where I am today because of it. I'm excited to see what other opportunities arrise with my acting and modelling, and I feel blessed to be able to do so as part of Team Zebedee!
Photographer: Sophie Mayanne. @sophiemayanne
Iyass Baba @iyassb
My son, my amazing boy, my miracle boy. I gave birth to Iyass at 24 weeks and 4 days gestation weighing 610g.
This meant he was 16 weeks (4 months) early and given a 20% chance of survival.
With no eyebrows or lashes or even nipples he was still perfect to me.
I was so scared in a way impossible to imagine. So the Floodgates opened and I cried and cried until the nurse told me not to cry by his incubator because he could feel my emotions so if I was sad he would be too and just like that it was like my tear ducts had been removed. I was positive and hopeful and although in the background the feeling of failure bird in my stomach I put that away everyday while I was by his incubator and only allowed myself to accuse myself of the inability to carry to full term when I was away from him.
I use this to fuel my determination and turned the jealousy I felt for the nurses as they cared for my child Into a willing student learning everything they did for him in order to take over and do it myself. It felt amazing to feed him even though it was through a tube and do his cares without any assistance, and when it came 2 expressing milk for him I would express so much that by the end of each day I would be bruised and sore but please that my son had enough milk for the day.
As a result of being severely premature, he had a grade 4 haemorrhage which is a bleed on the brain. Doctors explained that the area of the brain the bleed occurred would dissolve once the blood had dried up so it was a waiting game to see how that would change our lives.
As if all that wasn’t scary enough my little fighter contracted an infection called NEC which causes the bowel to die. So we had to undergo urgent surgery to investigate the damage caused unfortunately the damage was minimal. He had a stoma and a fistula for 6 weeks before his bowl was reconnected. In that period, I again learnt how to change the stoma bag and do all his cares unaided. That was the only way I felt useful.
He was diagnosed with cerebral palsy right-sided hemiplegia when he was 1. It was scary emotional and unfamiliar, but I realise that all this was just the name as we were already living with the condition and we were fine.
Now my miracle boy is 4 years old and just started reception. We do have some challenges but I refuse to limit him and as a result I strongly believe every milestone he has achieved is due to our no limits policy in the house.
Iyass will be a paediatric surgeon one day (unless he chooses not to follow my plan for him🤦🏾♀️😂)
People always tell me what a happy boy he is and how amazing I am but I’m just a mum determined to give my son the best possible chance of a life free of prejudice and stigma.
To every parent out there the only thing I could say to you is get to know your child. Move at your child's pace and not the milestones given in all these books that try to brainwash you into labelling your children.
Be happy and your children will be happy because they are a mini you.
Love Ruhia and Iyass
Ezzy Hodge was born fighting 04 Jan 2014 weighing just 3lb she was born 11 weeks 5 days early due to mums having kidney failure. She spent 6 weeks in NICU. She Was diagnosed with Cerebral Palsy spastic Diplegia in summer of 2016 after 2 yrs of trying to get a diagnosis . We where told she would never walk unaided and would spend most of her life in a wheelchair. She has had an operation in USA September 2017 after we fundraised £80,000. Ezzy is now working hard towards walking unaided and getting stronger. She is doing amazing she has just started school and walked into school with her frame and partially unaided. So the future is looking very strong for our CP Warrior she never gives up loves life and does everything with a smile.
Images Shelley Richmond @shelley_richmond_
Holly Greenhow @holly_greenhow_child_model
Holly is 12 years old and has Athetoid Cerebral Palsy; this is a result of clinical negligence at birth where she lost oxygen for 34 minutes; Holly was delivered at almost full term and therefore fully developed; whilst her body was trying to survive without oxygen it ensured that it kept hold of her intelligence for as long as it could. The damage to her brain is in her Basal Ganglia which controls movement and balance; this means that she is unable to sit unaided, walk or talk; she is unable to do anything for herself and will always require 24 hour care.
As a consequence of the above Holly is a very bright little girl who understands everything and even attends a Mainstream School; she has aspirations like any other child of her age and would even like to go to University. Communication is her biggest challenge and where she needs other people to listen to her with more than just their ears. Holly is a very socialable little girl who yearns to have more friends so that she can be more like other children her age and has really enjoyed the modelling that she has done to date; it’s great to try and break boundaries and start to make models with disabilities part of the our future.
Holly has been fortunate that we have always been able to try new treatments that may not be widely available such as Brain Training and even Stem Cell Infusions; we will try anything that might help Holly to reach her full potential (whatever that is); as her Mother I want her to be an advocate to help others and share our experiences of what we have learnt.
We will never say never …. There is always hope.
MEGAN RILEY @meganeveriley
I remember the day very clearly when Megs was born and how heartbreaking it was to hear your baby had suffered a seizure and was very unwell , the overwhelming feeling of sadness and fear for your baby and self as your lives takes a very dramatic turn from you what imagined just a few hours before . It` actually very difficult to go back to that time and put it into black and white because you do get over it and somehow manage to deal with all the crap that is going to be thrown at you over the next few years . You find the strength because you know your little baby lying in that incubator is going to need you to be so strong and fight their corner for the rest of their life. It wasn`t easy but you do it and some days will be better than others but you will look at your baby and still love every inch of them and we wouldn`t change Megs for the World!!
She`s the most unique special girl that’s full of love and happiness and brings so much joy to us all! Her life and ours are on a very different path from other families that have children the same age as Megs. There are always going to be obstacles and struggles but we fight on and give Megs the life she deserves. It`s tiring and exhausting at times but to see her happy and loving life so much it makes it all worth it !
The one thing I wished I could change is that I had reached out to other parents sooner going through the same situation, not sure why I didn`t then, maybe a little in denial about what was going on!? But now speaking to other parents experiencing the same heartache and situations as us does somehow make it feel a little bit normal that you are not alone. (by mum Kelly Wilton)
Photos Shaun Bailey @newfocusphotos
I remember the day very clearly when Megs was born and how heart-breaking it was to hear your baby had suffered a seizure and was very unwell , the overwhelming feeling of sadness and fear for your baby and self as your lives takes a very dramatic turn from you what imagined just a few hours before . It` actually very difficult to go back to that time and put it into black and white because you do get over it and somehow manage to deal with all the crap that is going to be thrown at you over the next few years . You find the strength because you know your little baby lying in that incubator is going to need you to be so strong and fight their corner for the rest of their life. It wasn`t easy but you do it and some days will be better than others but you will look at your baby and still love every inch of them and we wouldn`t change Megs for the World!!
Mia had a brain injury at birth, and has cerebral palsy which effects all 4 limbs. She will probably never stand or walk, but that doesn’t stop her from being a happy little girl and living life to the full, with a cheeky smile.
Photos Sophie Mayanne. @sophiemayanne
Katie- Image by @daniellerichadsonphotogrphy
Stamford @stamford_zebedeemodel Stamford's C.P. story is a story of hope and struggles, but it will hopefully reassure other parents who are in a similar position. I had a normal healthy pregnancy, I loved feeling my baby kick and the way he would move around when I sang to him. I have rhesus negative blood, something I never knew until I was pregnant. I was told that with my first child this wouldn’t be a problem. I went to the hospital for my last check up at 36 weeks and I pushed the midwife to do more checks than usual because I hadn’t felt my baby move all day. I noticed her look alarmed and I was quickly informed that I needed to be induced because my baby’s heart rate was unstable. Skipping the gory but natural birth details, I gave birth to a healthy baby boy, weighing 5lbs, at exactly 37 weeks old. I began to notice that he was more Simpson looking and he spent a few days receiving treatment for jaundice. I took my precious bundle of joy home, now named Stamford, meaning “strong fort”. I knew something wasn’t right very early on. I don’t have any other children and I had no one to compare him to, but something felt wrong. Stamford screamed when he was put on his tummy, he was very floppy and he couldn’t latch on, despite the midwives telling me I wasn’t doing it right. By 6 months alarm bells started ringing and I took him to the hospital to speak to a neurologist. I was turned away 3 times until eventually I mentioned that Stamford wasn’t crawling at 10 months. We were quickly scheduled an MRI and this revealed a diagnosis of cerebral palsy. Left sided spastic hemiplegic cerebral palsy to exact. I was lost, my childhood dream of having a “perfect” baby was shattered. I didn’t know who to turn to and how to find out what cerebral palsy even was. I began searching the web and found a conductive education centre, which I took Stamford to once a week. We did daily physiotherapy, massage and stretches. I gave up work to put all of my time into helping my baby and I soon realised that my Stamford was a natural fighter. We may have not reached the “normal” milestones at the “normal” time frames but Stamford learnt to swallow solid foods at 1 and a half, say a few words at 3 and walk at 3 and a half. Stamford is now 7 and he is confident, incredibly loving, intelligent and determined. Determined to be the best he can be, to push himself that little bit further, and to not be held back by his disability. This isn’t the life I expected for my son, but I wouldn’t change him for the world. Life is what you make it. Who knows what we have to face in the future, but we march on together, hand in hand, and we fight!
Our Daughter Daisy was born overdue at 40 weeks + 5 Days, despite having a normal pregnancy Daisy had to have an ECV at 36 weeks because she was breach. Our Community midwife warned us to inform the hospital that due to having an ECV and having a floating head we were at higher risk of cord prolapse, and that we should inform the hospital of this as soon as i went into labour. On the evening of 26th June after a long walk, i started to get contractions, we contacted the hospital and advised them of what the midwife had informed us, but the hospital were adamant as this was my first pregnancy i was not high risk and i should get into a bath. I followed their advice and after another two phone calls we were then advised to go in. We arrived at around 2.50 am and my beautiful daughter Daisy was born around 3.20 pm. Unfortunately the worse case scenario had happened Daisy had a cord prolapse, and when the midwife eventually recognised this Daisy was literally forced out of me in order to save her life, there was no time for a caesarean at this point. She was immediately rushed away and resuscitated, which seemed to take a lifetime, we never heard her cry. Daisy was then put into an incubator and measures were put in place to transfer her to another hospital 45 minutes away where there was a cool bed available. Daisy was transferred to the other hospital around 7am, and was put onto a cool bed to help the brain damage and swelling that she might have already occured. She was on the cool bed for 72 hours. We were not aloud to hold her, stroke her, kiss her, in fact one nurse told me off for stroking her finger as i may have stimulated her. As the days went on she was eventually transferred to Intensive care and then high dependency. We stayed in that hospital for over two weeks and eventually Daisy was well enough to be transferred back to our local hospital where she stayed in SBCU for around another two weeks. The hardest part was not being able to hold your baby for two weeks, not cuddling or giving the love she so desperately needed. We recently found out that Daisy did not have a cord prolapse it was actually a cord presentation, the cord was compressed over the top of her head.
Daisy is now 8 years old, and I won't say it is an easy life but it is the most rewarding thing i have ever done, Daisy is such a beautiful little person, shes funny, determined, cheeky and cute all rolled into one, and she knows it... I would not change her at all because she wouldn't be the Daisy we know and love so much. Having a disabled child makes you look at yourself as a person and makes you evolve in a way i never thought possible, it makes you realise what parenting is actually all about.
The initial doctors we spoke to when Daisy was first born did not give a hopeful outcome, she would be blind, deaf, won't walk, talk etc.
How wrong they were, Daisy now attends main stream school, has more friends than i could ever have imagined, she uses a walking frame, and uses an eye gaze computer to communicate.
This hasn't come easy, it's been 8 years of fund raising, hospital appointments, physio, Speech and language therapy, occupational therapy, Oxygen Therapy, Bobath Therapy, house adaptations and house moves to accommodate her needs. disagreements with various professionals about what is right and wrong for her. Work and home life adjustments, financial strain on a massive scale, disagreements with family and friends who didn't understand her needs and disability.
Even though we seem to have to fight for the things she needs to live her life on a regular basis, this is nothing compared to the determination Daisy has in her heart, she fights with her body every day to do the simple things we all take for granted, and every day she wakes up with a smile. I don't know many people who can do that, do you.....
Jacob- A medal winning swimmer at #cpgames
Photo by @alia.rose.nw
Jessie Jessie was born 8 weeks prematurely. Well we say prematurely but after I (mum) had been critically ill during my pregnancy we think Jessie just decided to bail out early. Jessie was diagnosed with cerebral palsy at 12 months of age. The muscles in Jessie’s legs and her right arm are affected which means that she cannot walk independently, she also needs assistance with two handed tasks. This however doesn’t stop Jessie. Jessie has a great outlook on life and is really positive. Jessie is the first to offer assistance to anyone, she is brownie leader and loves to help the younger brownies and is a librarian at school. Jessie enjoys crafting and baking and likes watching quiz shows and cooking programmes she also loves reading. Jessie has a great imagination you will find often find her sat with her head in a book or sat dreaming and writing about her next adventure. Jessie is known for her smile, she is always giggling or telling jokes about something she is definitely our ray of sunshine. Jessie saw Rafi and Sara on this morning and was inspired by them, she said she would love to do modelling like they do. We contacted Zebedee over a year ago and here we are. Jessie appeared as Rosemary in the CBCC drama ‘Katy’, she has been photographed for Pyjama fairies and will shortly be appearing on another CBBC show.
After a CP diagnosis you worry where your child will end up.
Don’t worry about milestones- or ‘millstones’ as we call them. As the parent of a child with CP celebrate enabling them to achieve what they can do, help them celebrate each and every ‘inchstone’.
-adapted from www.charlies-dad.org/2015/03/03/inchstones/
Charlie By @newfocus photography.
We have worked in partnership with the amazing creative agency @elviscomms & many amazing photographers on this project- huge thanks to everyone involved.