Author Archives: Sarah Jones

Rhys and Anthony Take on Superhero Triathlon

Rhys, Anthony and Kevin

Rhys, Anthony and Kevin

When Rhys watched his sister take part in her first sports day, he wanted nothing more than to join in. His limited mobility meant that he couldn’t run the race himself but dad Anthony had a great idea to help Rhys get involved.

Anthony said: “I couldnt disappoint Rhys after he had such a great afternoon and was getting excited about racing so I carried him to the starting line and when it was time to go we were off. I held my arms round him, kicking his legs forward as if he was running himself.  He was absolutely hysterical with laughter all the way, people clapping and cheering him on, he was loving it! It was brilliant and both mum and I were mega chuffed that we did it.”

Rhys enjoyed the experience so much that Anthony was inspired to take on a new challenge.

“This is what has inspired me and my friend Kevin Davies to do something with him…not for him…by entering the Superhero Triathlon on the 19th of August in London. With Kevin completing a ‘Tough Mudder’ experience and me just being dad, we are going to to take part in a 20k cycle, 5k run and 750metre swim. We are going to give Rhys an experience he has never had and will certainly remember. Hopefully inspiring hope and encourage more people to take part. We want to raise money for Cerebra who have supported Rhys with this opportunity and raise awareness for help and support for more SEN kids like Rhys.”

Rhys and Anthony will be using a boat designed by the Cerebra Innovation Centre. They tested it out ahead of race day in the swimming pool at the University of Wales Trinity Saint David Carmarthen campus.

Rhys and Anthony will be taking part in the Superhero Triathlon on 19th August. You can support Rhys and Anthony through their Just Giving page.

Anthony put together this lovely video of him and Rhys:

Christine Braves Wing Walk

We would like to say a massive well done and thank you to Christine Bunting who completed a wing walk to raise money for us on 4th August.

Christine is a member of our London Minds group and is no stranger to taking part in high adrenaline activities, having already completed a skydive back in 2015.

For this exciting new challenge, Christine took to the air on a 1940s Boeing Stearman biplane with the Breitling AeroSuperBatics Wing Walking team at Rendcomb Aerodrome in Gloucestershire.

Despite the rapidly growing list of activities she has ticked off her bucket list that have involved her to take to the skies, Christine actually has a fear of heights!

Christine said: “I wanted to do one last big fundraiser for Cerebra before I hit the ‘big 60’ which is rapidly approaching!

“I spent last winter wondering what I could do to top my sky dive because I wanted to do something that people would feel was really worthwhile to pay me to do.

“An idea began to brew and in a moment of, what I can only describe as complete and utter madness, I decided to sign up and perform a wing walk.

“Of course, now I’ve started telling people and raising money, I can’t quite back out and I have to go ahead with it!”

Christine has raised over £1,500 so far and you can visit her Virgin Money Giving page to help her reach her target.

Josh Nurse Becomes an Ambassador

Josh receiving his Ambassador certificate

Josh receiving his Ambassador certificate

Joshua Nurse from Pontiets, Carmarthenshire is celebrating his 16th birthday by becoming an Ambassador for us and drawing the winning tickets in our Summer raffle draw.

15 year old Joshua Nurse from Pontiets is the same age as Cerebra – and we have known and worked with him and his family since he was a baby.  Josh was born with a rare condition called Agenesis of the Corpus Callosum. It means that Josh is missing all the connective tissue that links the right and left hemispheres of his brain, which has resulted in Josh having learning disabilities and autistic tendencies.

It took a long time before it was recognised that Josh had a problem, but when Josh was finally diagnosed his parents didn’t know where to turn – until they found Cerebra.

Josh has also been a great help to the charity when we’ve needed him – he has drawn winning raffle tickets presented cheques to lottery winners and posed for photos for charity publicity. He’s attended prestigious events at 10 Downing Street and the House of Lords and was delighted when we nominated him for a Child of Courage Award at the Journal Awards ceremony a couple of years ago – and he won! Josh is such a pleasure to be with and he has touched the hearts of everyone who has met him.

Josh celebrates his sixteenth birthday in August and to mark the occasion we have asked him to become an Ambassador for Cerebra, On 31st July Josh drew the Summer Raffle and was officially welcomed as an Ambassador – as well as enjoying an early birthday celebration with charity staff!

Elaine Collins, PR & Marketing Manager for Cerebra said: “It’s been such a pleasure to have known Josh and his family all of these years and to have watched him grow up – he’s touched the hearts of everyone who has met him. He’s done so much to help raise awareness of our work and we’re delighted to make him an official Ambassador for us”.

You can find out more about Cerebra and their Ambassadors here.

Innovation Centre Test New Surf Boards

Our Innovation Centre has been doing some pioneering work with surfing equipment for disabled children over the past couple of years

They recently received funding from Claire’s Project which allowed them to produce two new surf boards, one of which was produced in time to be tested out at an event held by the Wave Project.

The board was used by about 10 children over the course of the weekend and even got used by a dad sitting in the seat holding his young daughter.

Ross Head from the Cerebra Innovation Centre said: “It went down a storm with everyone saying about how great it was. They are the happiest bunch of humans I have every come across!”

Some great photos of the day were taken by Checkered Photography.

You can find out more about CIC’s work here.

If you think they can help you with a problem, contact the team at cic@cerebra.org.uk.

Thanks for being Head Aware with us!

We’d like to say a huge thank you to everyone who joined in with our Head Awareness Week this year.

You really blew us away with all your commitment to wearing silly hats, wigs and whatever you could get your hands (or heads!) on!

A big thanks to Bolt Burdon Kemp, Centric Pontypool, Enable Law, The Hospital Saturday Fund, Irwin Mitchell Leeds, Novum Law, PenCru, Tomcat, Ruffer, Talking Mats and Wolferstans. They all fully embraced Head Awareness Week and got their staff to pose in an impressive array of head gear. You can see a selection of our favourite pictures below.

Thank you to everyone who took part and remember, if you would like to donate, you can still do so by texting HEAD20 and the amount you would like to give to 70070.

Alex Completes 60 Mile Trek

Alex and Ezra at Mwnt Beach

Alex and Ezra at Mwnt Beach

We would like to say a huge well done to Alex Elsaesser who recently walked through the night to complete a 60 mile trek along the Ceredigion Coastal path.

Alex said: “In the end it took us 29 hours walking to finish the 60 miles. Walking on the cliffs through the night was mental.  The group that organised the Walk pulled out a month before so we had to do it on our own. Fortunately we had beautiful weather and light winds. The scenery was beautiful but I would never suggest anyone do this all in one go. I never want to see another gate!”

Alex has completed many challenges for Cerebra previously including taking part in the London 10K for several years. He wanted to finish his run of fundraising with a bang and we think he has succeeded!

The 71 year old was joined on the walk by Jess Elsaesser and Ezra Mathias.

The group have so far raised an incredible £2,450 for Cerebra – far surpassing their initial £750 target. You can still support them through their Just Giving page.

Anne and Brian Make Fantastic Donation

Mrs Pearce hands her cheque over to Laura MacDonald

Mrs Pearce hands her cheque over to Laura MacDonald

The story of one little boy inspired Anne Pearce and her husband Brian to donate an incredible £5,000 to Cerebra!

Anne first heard about Cerebra from one of our Ambassadors, Nicola Tilson. Nicola has received support from our Sleep Practitioner Laura MacDonald for her son Alfie.

Nicola said: “Alfie had been diagnosed with a complicated medical condition. At that point, he had retired into his own world and we weren’t really sure how to bring him back.

When Laura came, it was a turning point for us. Since then, Alfie’s gone from strength to strength. It’s been progress after progress.”

Nicola has held several fundraising events for us, including several at Nationwide building society, where she works and that’s where Anne met Nicola and was touched by her family’s story.

Anne said: “I’ve been a customer for 20-odd years. I got to know Nicola and the fundraising they’ve done here. Nicola told me she wanted to fundraise for Cerebra for what they’ve done for her little boy.” When Nicola told Anne about her latest fundraising event, and she just simply had to be involved.

Nicola said: “Mrs Pearce, being Mrs Pearce, wanted to help. She came in to the bank a few days later with a cheque and we were absolutely blown away”.

Anne and Brian are both battling cancer themselves but still feel compelled to help in any way they can. As well as helping with donations, Anne has also knitted outfits which were used to clothe premature babies at St James’s Hospital in Leeds.

Thank you Anne and Brian!

Massage Helps Improve Bedtime Routine

Our Sleep Practitioner Pattie Everitt was recently able to help Freddie and his mum Abbie build a better bed time routine, improving the quality of family life for everyone.

Freddie had problems with night waking from around 9 months old.  He was not crying or upset but tended to talk to himself, shout and make loud noises. His mum, Abbie, got in contact with us when Freddie was 4 years old. He went to sleep fine each night, but was often awake for long periods during the night, sometimes up to 4-5 hours. Abbie would try to calm him down and get him back to sleep, but nothing seemed to work.

Pattie Everitt, one of our Sleep Practitioners, went to visit Abbie to discuss some new ideas she could try.  Although he was settling quite well, they talked about how making Freddie more relaxed before bed might help him sleep better at night.  This included introducing a wind down routine that was relaxing for him, and Abbie decided to try a back massage to help calm him down before bed.  They also discussed using weighted objects, such as heavy cuddly toys/ wheat sacks that might help Freddie feel more secure. Pattie also suggest a slightly later bedtime as he was going to bed quite early.

After some ongoing email support, Abbie managed to improve Freddie’s sleep quite a bit. The waking in the night reduced enough so that is was more manageable, with him not waking until around 4am (then going back off to sleep), so sleeping for a much longer block. He also enjoyed the back massage!

You can find out more about our Sleep Service on our website.

Samuel and Angel Bake Some Sweet Treats to Raise Funds

Samuel, Angel and Jacky

Samuel, Angel and Jacky

On Saturday 1st July 2017, Samuel Turner and his friend Angel raised £50 for Cerebra at a fete at Treetops, a specialist school in Essex.

They made some delicious cakes to sell at the fete and even made a very special Cerebra cake which was of course Samuel’s favourite!

Cerebra Cake

Cerebra Cake

Samuel said: “In my heartfelt experience, it’s never a matter about what it means to anyone, this lovely Cerebra cake is not just to raise money for the charity, it’s about hope and capability to show that there are children around the UK that are suffering problems inside and I believe that we should help to find a solution because people might be unaware of the child’s problem.

I’m proud to make this special cake. I think some student and pupils would love the cake I made and me, my mum and my friend Angel have felt the love for being at Treetops School to help Cerebra. This does makes me, my family and my friend Angel feel so special for our great efforts since I started helping the charity at the start of 2017.”

For Samuel’s friend Angel Jolly, it was a life changing activity unlike anything she has ever experienced.

Fete table

Fete table

Angel said: “We all were excited to be at Treetops fate. Once we got there, we all worked hard as a team to decorate our table for the fete. At first, I thought we’re going to sell a lot of cakes. Sam and I wore the Cerebra shirt and Jacky, which is Samuel’s mum was wearing a Welsh t-shirt. Originally, the Cranberries cake went to the Bake-off competition but we didn’t win. In the end, we took part and we are all very happy.”

We’re very lucky to have fantastic fundraisers who are always willing to go the extra mile to raise funds and awareness for Cerebra.

If you would like to find out how you can support Cerebra by holding your own event like this, please contact our fundraising team on 01267 244222.

 

Night Waking and Building a Better Bedtime Routine

James

James

James’ family were struggling with his bedtime routine and night waking. Our Sleep Practitioners, Pattie Everitt explains what sleep and advice she was able to give to help them tackle the problem.

Seven year old James has ASD and had great difficulty settling to sleep. He needed a parent with him until he fell asleep. He also woke in the night, went to his parent’s bed, and would then stay there for the rest of the night.  This would result in his dad moving to sleep on a mattress to be able to get more sleep.  The parents were finding this a great strain, as they did not have an evening together or a good night sleep.

Pattie explained that the waking in the night is something everyone does, normally without realising, but because James settled with a parent at bedtime, he would wake up, notice that they were not there, and then need their assistance to settle again.

The normal approach to this problem would be to reduce the contact gradually, by sitting a bit further away every few nights as the child is falling asleep and keep doing this until the parent is back downstairs.  Pattie advised the family to try this, along with keeping the wake times the same each day so that James would get into a more consistent sleep pattern.  A couple of months later, James’  mum replied with the following:

“Thank you for your response and advice. We have started the process of removing ourselves from James’ room at bedtime and he is now accepting us being out of the room – just outside. I suspect that the next step is to move further away which will then, as you say, reduce the nighttime anxiety, as he will get used to being on his own. We have also been sleeping with him during the night to keep him in his own bed and out of the habit of coming into our room.  We are now thinking about whether we can move out but looking at your advice, we would also have to do this slowly.

Thanks for the advice on consistent bedtimes/wake times. We have managed to get him to bed a bit earlier by creating a more consistent routine but it can still take him a long time to go to sleep. I suspect that might just be the autism and a need to wind down?  If we can get him to stay in his bed this, together with an earlier bedtime, is perhaps not so much of a problem.”

The parents persevered with the technique over the next few weeks, and also introduced one of their own:

“We have recently turned a corner with James’ sleeping with the use of a book on CD at bedtime.  We listen to the CD with him, following the book, and then we turn the lights out and leave it on repeat at a quiet volume. James has learnt that when the CD is on, it is time for bed and that he should stay there. Although he still takes a while to settle to sleep, with the help of the CD, he is staying in his room.  We leave the CD on very quietly through the night and he now stays in his bed.  This is a dramatic turn-around and I think this strategy has worked because it provides a clear structure/cue about what James should be doing, and the CD helps his anxiety about being on his own/going to sleep.”

According to Pattie, using sound such as a CD to help with sleep can be beneficial, but if used for settling at bedtime it is often best to keep it at a low level all night as James’ family did so that he is exposed to the same environment when he wakes in the night.  This can help the child fall asleep again on their own.

James’s mum was grateful for the support through the process:

“There is so little help out there for sleeping difficulties so your service is so valuable!“

You can find out more information about our Sleep Service here.