Tag Archives: Poppy

Poppy to Take on Second Triathlon Challenge

Rob and Poppy

Rob and Poppy

Last year, eleven year old Poppy Jones realised her dream of competing in the Cardiff Triathlon. This was particularly challenging for Poppy as she has chronic lung disease and quadriplegic Cerebral Palsy. This means she can’t sit, stand, roll or support herself and life is a daily challenge for her, but having a life-limiting condition doesn’t stop her having fun.

Poppy’s Dad Rob helped make her dream come true by pushing/pulling her around the course using custom made equipment specially designed by our Innovation Centre (CIC).

The father and daughter team will be once again rising to the challenge, taking part in the Swansea Triathlon on 28th May.

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 team at team at the Innovation Centre, who designed the equipment that allowed Poppy to take part in the Triathlon last year,  took this opportunity to re-design some of the equipment to allow Poppy to compete on an even larger scale.

“Last year, we designed a chair and boat in Poppy’s favourite colour – yellow,” says Dr Ross Head from the CIC.

“For this year’s challenge, we’ve modified both products to make them more efficient; to make them faster – and to change the look to match Poppy’s new favourite colour, orange!

“Poppy’s also grown a lot since last year’s triathlon and the boat we built last year was too small. So I redesigned the boat to be bigger, however this meant it would be heavier, so I started from scratch using everything I had learnt about hydrodynamics to ensure the boat would be fast, efficient and create the minimum resistance so that Rob could swim the course. This year’s boat uses a V-shaped tri- hull. This allows speed through the water but is given stability by the two smaller outrigger hulls.

“Poppy’s Triathlon Chair has also been upgraded to make it faster and more comfortable. The guys at V-Trak very kindly donated some high quality wheels to help them roll to the finish line. It has upgraded bespoke components which will ensure efficiency, a speedy transition from cycling to running and ensure Poppy’s safety.“

The CIC team recently tested the boat out on the water (see below for photos).

You can sponsor Rob and Poppy through their Just Giving page.

 

 

Summer Raffle 2016

Poppy and Rob

On 29th July 2016 eleven year old Poppy Jones drew the winning tickets in our Summer Raffle.

Poppy, who has cerebral palsy and chronic lung disease, made the news last month for completing the Cardiff Triathlon with her dad, Rob. The pair completed the challenging course using equipment designed and made by the charity’s Innovation Centre.

The pair have since become Ambassadors for Cerebra and are delighted to be able to help raise awareness of the work the charity does.

Poppy said: “Cerebra is special to me because they help support children like me with brain related conditions. When I was younger I spent a lot of time in hospital. In the past 3 years I have been better and helped fundraise for charity. This year, I did my first triathlon for Cerebra – it was amazing! My type of cerebral palsy is rare so I like to tell people more about disabilities and me. Next I would like to do the London marathon so more people can hear about Cerebra”.

The event was also chance to celebrate Poppy’s incredible achievement at the triathlon where she really did achieve her dream of overcoming all the odds and proving that she can do anything, with a little help. The duo helped to raise an amazing £10,000 for the charity which will be used to support more children like Poppy.

We hold two raffle draws each year with the top prize winner receiving £5000, a second prize of £1500 and a third prize of £500. There are also ten £100 Love to Shop vouchers for the runners-up. The lucky winners from the summer draw have been notified.

If you’d like tickets for our Christmas draw please get in touch with louised@cerebra.org.uk.

Living with Hemiplegia and Epilepsy

PoppyWe 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 eleven year old Poppy tells us her story.

“My name is Poppy and I have left-sided Hemiplegia and Epilepsy.  For people who don’t know what I have I will explain. Left-sided Hemiplegia means that you have a weakness on one side. Sometimes my arm does strange things. I use my left hand for steadying.  I also pick up the dice with my left hand when Mum and I are playing games. But otherwise I have difficulty using my affected hand and arm. I wear a lycra arm and hand splint to help stop my arm and hand from going everywhere.

My left leg has a high tone and that makes walking difficult. My left leg is also shorter than the right so I have a heel raise on my shoe. I wear a splint otherwise I cannot walk.

I had some surgery a few years ago because I could not walk at all then, because my foot was at an odd angle. I use a manual wheelchair sometimes if I get tired. I will be using a powered wheelchair around my new secondary school because it’s really big.

The type of Epilepsy I have is Focal Seizures. They are boring because you have to sit and wait for them to go away. This is what I think I look like.

I have to take medication twice a day but I still have seizures. My seizures make me feel woozy and I can’t think very well at school. Sometimes seizures upset my sleep and am awake during the night for hours so I am tired the next day.  My tummy feels odd too when I am having seizures and I go off food. I feel unwell for days before and after my seizures.

I like playing tennis with my Mum, which is good physiotherapy. I also have an adapted trike which I try to ride every morning before school, if I am feeling well enough. I love swimming but I haven’t been able to go for a while because of my seizures. I haven’t been able to attend my drama or karate clubs either because of feeling unwell. My seizures mean I miss out on lots of things. They are really annoying.

I was two when I got left-sided Hemiplegia, luckily I can’t remember anything. I was very poorly, and I could have died.  That is what Mum says anyway. I had E-coli and had to stay in hospital for seven weeks.

I got my Epilepsy when I was eight, when puberty started. So Mum thinks that my Epilepsy was triggered by puberty (which I agree with). I hope that means I will grow out of it. I really want to drive when I am older but if I still have seizures I won’t be able to.

I changed primary schools recently because I was having problems with friendships. It had been going on for a while. It made me feel like I was invisible. Now I am at a new school and it is better. I have nice friends. But I am told I am behind a lot and I need to catch up which stresses me out. Mum had a talk with school about avoiding saying I am behind because anxiety can trigger my seizures.

Hemiplegia doesn’t just affect my body though, it also has hidden effects – I can have difficulty processing information and with remembering. When I have seizures it affects these two aspects even more. Mum says I repeat myself a lot and get confused.

I have lots of hospital appointments and see lots of doctors and professionals. It’s really annoying. When they talk about surgery it upsets me and I feel worried.

I get up at 6a.m. every morning because I have a lot to do. I do daily physiotherapy and Occupational Therapy before I go to school and I practice washing and getting dressed, which takes a long time. I get really tired.

When I grow up I’d like to be an author. I’d like to have a family and be happy.”

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.

Poppy’s Triathlon Dream

Go Poppy!

Go Poppy!

Eleven year old Poppy Jones from Abergavenny has achieved her dream of competing in a triathlon with her dad, Rob.

On 26th June 2016 Poppy Jones and her dad Rob took part in the Cardiff Triathlon together to raise money for Cerebra. But they faced an additional challenge – eleven year old Poppy has cerebral palsy and Rob pushed and pulled her around the course using custom made equipment specially designed by our Innovation Centre.

Eleven 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 11 years”.

Poppy takes to the water.

Poppy takes to the water.

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 faced 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.

The cycling stage

The cycling stage

Mum Rachel, along with the rest of the family and friends, were 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!”

Crossing the finish line

Crossing the finish line

The project has been a huge challenge for Cerebra’s Innovation Centre who designed and made the equipment that Rob and Poppy needed to take them to the finish line.

In this video, Rob and Poppy tell their story in their own words:

We would love it if you could support Rob and Poppy! If you would like to donate please visit www.justgiving.com/Rob-Jones42.

We would like to thank the following companies whose sponsorship has helped to make Poppy’s dream a reality: Dischro Creative white

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Carmarthen Business Supports Poppy’s Dream

Ron handing over the bike to Rob

Ron handing over the bike to Rob

Cerebra is making Poppy’s dream come true – with the help of Carmarthen based businessman Ron Mounsey and his daughter Pippa.

On 26th June 2016 ten year old 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 the charity’s design team.

Dad Rob is facing a real challenge in preparing for the event. He’s never taken part in a triathlon before and isn’t a regular swimmer, runner or cyclist. A few months ago he could only manage two lengths of the local swimming pool, didn’t own a pair of running shoes and is using his ancient bicycle to train.

On hearing of Rob’s predicament Carmarthen businessman Ron Mounsey and his daughter Pippa kindly offered to donate a bicycle so that the pair could complete their challenge. They presented the bicycle to Rob at the McDonald’s restaurant in Carmarthen on 22nd April.

Cerebra’s Innovation Centre, a partnership project with the University of Wales Trinity St David, are designing and building the custom-made equipment that Rob and Poppy will need to take them to the finish line: a boat that can be pulled for the swim and a chair that can be pushed for the running element and attached to the bicycle for the cycling phase. Now that they have a suitable bicycle the Innovation team can complete their work and the exciting designs will be unveiled soon.

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 explains, “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!”

Cerebra, Rob and Poppy are also grateful to Beiciau Hobbs in Carmarthen for donating a cycle helmet.

If you would like to support Rob and Poppy please visit www.justgiving.com/Rob-Jones42. Or if you would like to sponsor the project in any way please get in touch with us on 01267 244221.

You can follow their story on social media #Poppysdream.