Tag Archives: Cerebral Palsy

CP and Me

Sallie

Sallie

We are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article sixteen year old Sallie tells us her story of living with cerebral palsy (CP).

“When people say physical disability, most people think that this means someone who uses a wheelchair. This isn’t always the case. I’m Sallie, and I suffer from mild cerebral palsy. You might not understand what that is. It’s basically a form of muscle tone. The muscles in my ankles are tighter than most people’s which means that my feet turn in making it hard to walk.

Looking at me, it might seem that I don’t look that disabled. But it is obvious when I walk that there’s something wrong. My toes turn in as I walk, and my ankles are weak on one side and stiff on the other which make it incredibly hard to move. I have very little flexibility in my ankles, and this means I can’t keep shoes on. Unlike a normal girl of my age, I can’t wear slip on shoes or high heels because my balance is poor. This has always been the case – so I’m used to it. We don’t know if this is anything to do with my condition but my feet have always been really small – a whole size apart. I’m lucky if I can fit into a size three.

I’m by far not the normal person. Due to my increased muscle tone, I didn’t walk until I was around two and a half. I was lucky, though. Due to my specialist physiotherapists, I was able to teach my feet to stay down so I could walk on the whole of my foot rather than the toes like most people with cerebral palsy. This is why I didn’t walk until I was over two.

My CP made school quite difficult. I was more mobile then than I am now. I was quite a tomboy and preferred to try playing football with the boys. They let me play, but my slow speed meant I was often left out, unintentionally. I was unable to run around with the others which made making friends really tricky.

2010 came and I had an operation on my feet to try and release the tone in my muscles to improve my walking. I was confined to a wheelchair for two months, unable to do anything myself. But, if it hadn’t been for my surgeon, I wouldn’t be able to walk the way I can now. I have lots of physiotherapists, surgeons and paediatricians whose work has allowed me to get the best I can out of life.

I often got clapped just for just attempting to run at sports day – I got the pity clap. Most people thought I couldn’t do sport – but I proved them wrong. In 2010, shortly after my operation to split my tendons, I took up swimming with the Gloucester City Para Swimming Team. To date, I am now a six-time national qualifier, four-time international qualifier and double British Record Holder in the 4x50m 34 point medley and freestyle relays.

This is truly a case of I can do it – not what I can’t do. I proved people wrong – disability does not mean you can’t do sport. I have a dream to compete in the 2020 Tokyo Paralympics, and I will keep working hard to reach that goal. If you have a disability, you are not a sub-human, you are a superhuman”.

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on emmat@cerebra.org.uk.

Team Cerebra Gains Another Runner for London Marathon

Adam  during his 26 mile run from Nuneaton to Coventry in preparation for London

Adam during his 26 mile run from Nuneaton to Coventry in preparation for London

This year’s London Marathon is taking place on 24th April and we’re proud to welcome Adam Louth to team Cerebra!

Adam is 31 years old and works for Deloitte as a surveyor.

Adam told us: “I decided to run the London Marathon for the first time with my two brothers. Unfortunately they were both unable to get a place but I decided to commit and run it alone this year!

Two of my work colleagues have charities close to their heart and Cerebra has helped my colleague Mark whose son has cerebral palsy. I wanted to raise money for a charity where I could witness the positive effect the donations would make.

My goal is to complete the London Marathon, but If I can I want to hit the 4 hour barrier mark.”

If you would like to sponsor Adam, you can do so through his Virgin Money Giving Page.

Poppy’s Dream

Poppy and Rob ahead of their Triathlon challenge

Poppy and Rob

On 26th June 2016 Poppy Jones and her dad Rob will take part in the Cardiff Triathlon together to raise money for Cerebra. But they will face an additional challenge – ten year old Poppy has cerebral palsy and Rob will be pushing/pulling her around the course using custom made equipment specially designed by our Innovation Centre.

Ten year old Poppy was born with quadriplegic cerebral palsy and chronic lung disease. She can’t sit, stand, roll or support herself and life is a daily challenge for her. She has suffered many health problems over the years and there have been times when doctors didn’t think she would pull through. Dad Rob explains “there have been times when it has been very touch and go and we feel very lucky that she has been with us for the last 10 years”.

But having a life-limiting condition doesn’t stop Poppy having fun. Poppy is a determined character with a great sense of humour. Her sense of adventure knows no bounds. She is a real thrill seeker and adrenaline junkie and has a true competitive spirit.

Rob, meanwhile is facing a challenge of his own in getting fit for the event. He’s never taken part in a triathlon before and isn’t a regular swimmer, runner or cyclist. At Christmas he could only manage two lengths of the local swimming pool and is using his ancient bicycle to train.

Rob running on a treadmill preparing for his Triathlon challenge

Rob is put through his paces

The University of Wales Trinity St David, who are project partners in CIC, are also fully supporting Rob and Poppy’s challenge. The University’s renowned health and sports specialists Dr Peter Herbert and Nalda Wainwright, who coach elite athletes in their high performance laboratory, will be giving advice to Rob and Poppy on their training programme.

Mum Rachel, along with the rest of the family and friends, are right behind Poppy and Rob and are fully supporting them all the way, providing all the back-up and help they need. Rob’s motivation for doing this is simply to help his daughter: “taking part in this triathlon is so exciting for her and psychologically it will really benefit her. She gets so frustrated at the limits her condition puts on her and this will really focus her mind on what she can do. Poppy doesn’t think ‘I can’t’ but rather ‘with a little help I can’. I’ve got my work cut out though as Poppy doesn’t want to just take part – she wants to win!”

The project is also a huge challenge for Cerebra’s Innovation Centre who are designing and making the equipment that Rob and Poppy will need to take them to the finish line. Having seen one of CIC’s recent projects (the surfboard), Rob realised what it was possible to achieve with a little help and decided to set the charity the challenge of designing, engineering and manufacturing three unique sporting products.

Innovation Centre's design for Poppy's boat

Latest design for Poppy’s triathlon boat

In principle the plan sounded quite easy for the design team – Poppy and Rob need a chair on wheels and a boat. But Poppy wants to win! So they need a chair on wheels with suspension, every ergonomic issue addressed and resolved, it must roll well and true and must be comfortable for both users. It must be light, stiff yet comfortable. The “boat” will be a unique design, sleek, slender and with the least hydrodynamic resistance possible, yet it must also be stable, strong – and unsinkable! Engineering will be one of the biggest challenges, but the team have lots of friends who have already offered lots of help. They will be collaborating with V-Track seating systems, Loop Wheels, J.D.Marine for welding, and have been offered significant design advice by naval architect Richard Pemberton from Falmouth. Oh – and as Poppy’s favourite colour is yellow, that’s what it’s going to be!

Dr Ross Head, Product Design Manager at CIC, explains “It’s wonderful to have the opportunity to be a part of this challenge. It is incredibly humbling to be around someone like Poppy- she is bright, bubbly, smiles all the time, she doesn’t complain about her situation, she just gets on and makes the best of every situation. When we met with Rob he was very emotional at the level of support and enthusiasm we showed towards them. But it is the same for us, to be able to help them achieve this impressive task really will be a moment to remember”.

Rob at the starting point of the triathlon in Cardiff Bay

Rob meets Amy Jenner from Wales Triathlon, the CIC team and Cerebra Events Co-ordinator Cecilia Bufton in Cardiff Bay

Welsh Triathlon and organisers of the Cardiff event, Always Aim High, are fully supportive of Poppy and Rob’s challenge. Amy Jenner from Wales Triathlon said “’Welsh Triathlon are committed to making sure everyone can achieve their Triathlon challenge. This is a dual challenge – both Rob’s amazing physical challenge and Poppy’s determination to experience life at its full. The Cerebra team designing the special equipment, the race organisers Always Aim High, and the support crew, have worked wonderfully together to make Poppy and Rob’s dreams come alive as well as raise money for charity Cerebra and other brain injured children”.

 

We’ll keep you updated on Rob and Poppy’s progress over the next few months.

You can watch a great video about Rob and Poppy on our YouTube channel.

If you would like to support Rob and Poppy please visit www.justgiving.com/Rob-Jones42

Mike Shares his Story

Mike and LouieMike is father to 11 year old Louie who has Cerebral Palsy. He shares their story with us.

My name is Mike and I’m a tutor at a college in Exeter. I have three children aged 21, 20 and 11 years. One is training to be a teaching assistant and one is working as a care assistant. My youngest son Louie lives with me.

When Louie was a baby we thought everything was fine apart from just a slight delay in his development. When he was 6 months old the doctors broke the devastating news that he has cerebral palsy.

The cerebral palsy (spastic diplegia) has affected his mobility, speech and development. Louie is 11 but has the development of a 2-3year old. He is doubly incontinent and has limited speech and needs constant care and attention. He was also diagnosed with a bicuspic aortic valve (heart problem) so has a heart murmur and reflux and several other issues.

My partner and I had separated when Louie was 6 months old, but we both wanted to do what was best for our child so attended meetings about Louie together. I remember in the first meeting the doctor had to be very straight forward and factual and had to say ‘your son has a disability’. One of the things I always remember the doctor saying was ‘he’ll never play rugby’ and being a rugby player myself, hearing that was devastating.

The first thing is the shock and then the realisation that this is real and you don’t know where to go for help. I didn’t feel like there was anywhere I could go for help – I didn’t know anything about cerebral palsy, about medical conditions, what the limitations might be for our son, what the future held. I didn’t ask questions at first because I was in shock – I had been given this diagnosis that my baby won’t be able to walk, won’t be able to talk. It was difficult to know where to go to for support. What I really struggled with was that there was nothing that I could do about the fact that he had cerebral palsy. I couldn’t change this medical condition that is permanent damage to the brain; the brain can’t repair itself.

Instead of trying to find an answer of how it could be ‘fixed’ or trying to find someone to blame, the next thing you can try to do as a parent is try to educate yourself or try to find out as much as you can from other people in the same situation – not from an academic or medical point of view. How do you deal with this? What do you do about it? I mainly wanted to find out how his cerebral palsy would affect him.

I’ve been involved with the Cerebra Research Unit at Exeter University (PenCRU) for 5 years now. With PenCRU, I feel as if I am doing something, even if it’s only a little bit.  I’m doing something to try and make a bit of a difference. If I can help someone else going through the same thing to make their journey a bit easier it will be worth it. It’s about trying to use my experiences in a positive way.

Being part of the Family Faculty at PenCRU I can pass on my opinion and advice to help others make informed decisions in the same situation. It’s a bonus if I can help promote people’s awareness and help educate and inform people – I would like to be able to help those in a similar situation to me when they find themselves in the same position and support people along the way.

I really enjoyed attending a recent Cerebra conferences with PenCRU. It was great to be able to speak to the fundraisers who are trying to make a difference for your child – it was a great opportunity as a parent to share my experience. It’s great for people to see where the money goes and who it helps – you can say I am one of these people who have benefited from this and who can pass on knowledge and information.

The Peninsula Cerebra Research Unit (PenCRU) is based at the University of Exeter and carries out research that aims to improve the health and wellbeing of disabled children and their families. PenCRU is all about forming meaningful partnerships with families, working with them to undertake research.

You can find out more about the work PenCRU does here.

Oliver Completes Swimathon

Oliver and Hector

Oliver and Hector

Eight year old Oliver completes a swimathon in aid of Cerebra.

Cerebra are fortunate to have a network of fantastic fundraisers who do their best to ensure that the charity is able to continue its work.

Some of our youngest fundraisers who have really excelled themselves are eight year old Oliver Faulkner and his six year old brother Hector.

Oliver suffers from mild Cerebral Palsy but he has never stopped him from doing work to raise awareness of the condition and to use this determination to fund raise for good causes.

Oliver and his family recently moved from Tunbridge Wells to Abu Dhabi which has been hard for him but this hasn’t dented Oliver’s determination to make new friends. He even prepared a presentation for his classmates so that they could learn about his condition and Cerebra, who have helped Oliver along the way.

Oliver has previously raised money for us by running 1km. We feel very privileged that he decided to do so again, this time with a swimathon.

Oliver’s mother Sema said: “Oliver had been quite tired the week of the challenge so at first he was nervous but he soon got motivated once he got into the water and swam a massive 22 lengths! He was famished when he got out, so we celebrated with some pizzas. I am very proud of Oliver!”

Oliver was joined by Hector who cheered his older brother on every step of the way.

Dawn’s Rock and Roll Marathon

Dawn taking part in the Rock and Roll MarathonA huge well done to Dawn and Martyn for running the Liverpool Rock and Roll marathon!

On the 25th of May Dawn and Martyn completed the Liverpool Rock and Roll Marathon, raising over £600 for Cerebra!

Although neither of them had run a marathon before, Dawn decided she wanted to raise money for a charity like Cerebra thanks to her niece Abbie, who has cerebral palsy.

“It’s been a hard long 18 week training slog,” she said, “taking me to places mentally and physically I have never been before.”

It was all worth it in the end, however, with Dawn finishing the gruelling run in just over four hours. The run took them past some of Liverpool’s most iconic landmarks with live bands and music helping the runners on their way.

Everyone at Cerebra says a huge thank you to Dawn and Martyn for taking part in the marathon. Every penny raised is vital to making a positive difference to lives of children like Abbie.