Author Archives: Sarah Jones

Caldicot girl with cerebral palsy climbs South Wales’ highest peak

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Specsavers directors, team members and Cerebra staff with Imogen at the Pen y Fan summit

Six year old Imogen Ashwell-Lewis, who was diagnosed with cerebral palsy at birth, reached the top of South Wales’ highest peak on Sunday 7 October in a specially-modified four-wheeled mountain bike.

She was joined by more than 40 people – including Specsavers staff from South and Mid Wales, charity workers and even army soldiers – some of whom were harnessed to her to help pull and push her along.

Imogen’s mum, Catherine, says: ‘Imogen is so thrilled and excited to have completed this climb. It’s only thanks to the team at Cerebra that she’s been able to have this adventure – she’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being able to do things like this is a real boost to her confidence and self-esteem. She really is over the moon.’

The Pen y Fan challenge was co-organised by Cerebra and staff at Specsavers stores in South and Mid Wales, as part of their year-long charity partnership. The opticians are raising funds for the Carmarthen-headquartered charity, which currently supports 4,500 families across Wales.

Neil Robinson, West Wales regional chair for Specsavers, says: ‘Imogen and her family are an inspiration to us all, as are the services and support Cerebra provides to them and many other families across Wales. Watching Imogen complete this challenge is something I won’t forget in a hurry. I’m proud of our staff for giving up their time to help Imogen and the charity achieve something wonderful.

Everyone who took part at the top of Pen y Fan

Everyone who took part at the top of Pen y Fan

‘I’m thrilled we have been able to help raise awareness of the charity’s work, and hope it will lead to more young children with brain conditions discovering ways to live a better life with their families.’

In addition to our support services and research work, we also have an Innovation Centre based within the University of Wales Trinity St David, where bespoke equipment is designed and created, free of charge, to make children’s lives easier.

Imogen’s bike was a specially-modified four wheeled downhill mountain bike, designed and made predominantly for use by disabled people. It was created by Calvin Williams of Project ENDURO – a collaboration between experts at Swansea University, Gower College Swansea and the University of Wales Trinity Saint David. Project ENDURO kindly loaned the bike to Imogen for the climb and designers at our Innovation Centre made modifications to give Imogen the support she needed. Project ENDURO was supported by AgorIP, based at Swansea University’s School of Management, who are part funded by the European Regional Development Fund through the Welsh Government.

Terry Osborn, acting Head of Corporates, Trusts and Legacies at Cerebra, says: ‘We’re delighted to have joined the Specsavers team for the Pen y Fan climb. To be able to take Imogen with is us was a privilege and really does demonstrate that we don’t believe there is any challenge that can’t be overcome.

‘The invaluable fundraising support from Specsavers means that our Innovation Centre will be able to help more children to overcome their challenges and discover the world around them.’

This video shows Imogen reaching the top of Pen y Fan:

 

Big Thankxx to TKMaxx!

Terry, Cheryl and Amanda

Terry, Cheryl and Amanda

We would like to say a huge thank you to Cheryl Phillips, the Store Manager at TKMaxx Carmarthen. She applied for a TKMaxx community fund grant for Cerebra and we were given a fantastic donation of £1,000!

Cheryl said: “I’m delighted to be able to support such a worthwhile local charity!”

The cheque was presented to Terry Osborn, our Acting Head of Corporates, Trusts and Legacies and Amanda Tapp, one of our Fundraisers.

Difficulty settling at night

A young girl lying in bed awakeOne of our Sleep Practitioners recently helped a family who were struggling to get their daughter to bed, and to sleep.

Sleep Practitioner Laura explained: “Charlotte is ten years old and has ASD. Her main issues were settling at bedtime and sleeping alone. She was taken to bed at 9:30 but this could cause huge issues and arguments, or endless delaying tactics and bedtime was stressful overall stressful.

We agreed to focus initially on introducing a calming bedtime routine and suggested implementing a temporary later bedtime. Mum began taking her to bed at the time she was naturally falling asleep with the aim of very gradually moving this backwards by 15 minutes.

This, in combination with a calming bedtime routine (we chose a massage, red light and filtered glasses to watch TV with) meant Charlotte was going to bed in a much better mood, and falling asleep without any arguments or delaying tactics.

Charlotte’s mum Judith explains how they got on:

“I found Cerebra’s Sleep Service invaluable as the advice given was tailored specifically for Charlotte’s needs, taking into account her preferences. Prior to using your service, I felt that I had explored all options and nothing worked. She was very anxious and confrontational at night and would avoid going to bed at all costs.  However, with your suggestion of removing the stressors (wash, teeth etc) outside of the one hour prior to bed and using visual cues, she is much calmer. I have a board upstairs detailing what she needs to do to the point of going to bed and the time she needs to be in her own bed.

I was concerned as she loves to watch a DVD prior to bed and I was aware that blue light was an issue with sleep. However, you reassured me that if this was what worked for her, we could work around that. On your suggestion, I purchased red filtered glasses and she wears these with pride. I also purchased red night-lights as the ones I was using had a blue light.

When you examined her sleep pattern, it was established that a natural time for her to fall asleep was 10.30pm -11.00pm, so you recommended she wind down for one hour prior to 10.45 and then watch her DVD with her filtered glasses on. We did this for a month then successfully reduced bedtime by 15 minutes for a further month. I have just reduced this again by 15 minutes and she is accepting this without question, going to bed without arguing and not delaying going to sleep by trying to play games. She is waking up in a better mood and this is helping with her self care routine.

You also suggested as she was experiencing pain in her legs that this could impact on her sleep. The GP/nurse had always put this down to growing pains. However, you gave me the confidence to question this and my podiatrist diagnosed her with hypermobility which is now being treated with physio and she has orthotics fitted. She also has daily massages. This is reducing the pain.

Once she is taken to bed, I still need to stay with her until she is asleep. In general, she falls asleep within 20-25 minutes and I am then able to leave her. Once I have a bedtime routine in place where she goes to bed at 10pm, I will work on supporting her to self soothe so she can fall asleep unaided. You kindly offered to support me at that time as this is a stressor for her and causes anxiety, as she is afraid of being alone.

I am very grateful of your help as your suggestions were not ‘the norm’ offered by other professionals I have worked with who do tend to focus on ‘bath, book, bed’, which just didn’t work for us. Charlotte’s overall well-being has improved significantly because of your help and we have a much calmer, happier household. Without your support, I am confident that my daughter’s sleep habits would not have improved. Thank you”.

Download our great new sleep booklet for more tips and techniques to get a good night’s sleep.

Object of comfort helps Poppy sleep

Poppy, Simon, Bella, Gigi and Rachel

Poppy, Simon, Bella, Gigi and Rachel

Mum Rachel contacted our Sleep Service to get some advice about daughter Poppy who was having a number of sleep issues. She told us their story and how Sleep Practitioner Kaileigh was able to help the whole family settle into a better routine.

Poppy is 10 years old and has a condition called Fragile X Syndrome. This affects her in many ways in her daily life. She has a learning disability which means that she can’t read or write and has low muscle tone. She also has autistic like behaviour which means that she likes routine. She’s also asthmatic. This can all have a big impact on the way she sleeps.

Before her mum contacted our Sleep Service, Poppy would only settle to sleep if one of her parents were there and would always wake up early – around 4.30am. This would cause problems for the whole family as Poppy also shared a room with her sister Gigi.

Poppy’s asthma also often caused her to be sick in the night when she was younger and so her parents felt as though they needed to be near through the night and this had an impact on their sleep.

One of our Sleep Practitioners, Kaileigh, suggested a number of techniques for mum to try to improve the quality of Poppy’s sleep including using a comforting object. For Poppy, this meant introducing cuddly toys which she grew an attachment to and found comforting. She named her four teddies after people she cares about and having these through the night means that she has a reminder of her parents and can now settle herself without having to wake her parents.

Another positive change that the family has made is reducing screen time before bed. The light that our electronic devices gives off can disrupt our natural sleep cycles so reducing screen time and using a red light (red light doesn’t disrupt out sleep cycles in the same way as other light) in Poppy’s bedroom improved her sleep. She is now even able to sleep with only the landing light on – something she would never have been able to do before.

Poppy is now sleeping much better and she and her sister even have their own rooms now so they can be typical girls. Poppy has chosen a unicorn theme for her room!

Mum Rachel said: “thank you for all the help we have received from Cerebra. We haven’t entirely cracked the sleep issue yet but we feel encouraged with your help!”

Read more about using a comforting object and other techniques for getting a good night’s sleep in our new sleep tips booklet.

Cara smashes duathlon challenge

Cara Readle

Cara Readle

One of our Ambassadors, Cara Readle, recently completed a duathlon and raised over £500 for Cerebra!

This was a particular challenge for Cara as she was born with Cerebral Palsy, but she has never let anything stand in her way!

Cara’s duathlon saw her embarking on a 5km walk on a treadmill and a 5km cycle on a static bike. Initially the challenge was set to take place over the course of a day at Xcercise4less gym in Swansea but Cara did a fantastic job and managed to complete the entire challenge in just a couple of hours!

Cara said: “I set out to do something that I knew I would find very challenging but I wanted to challenge myself in order to raise money for Cerebra.”

To date, Cara has raised over £500 and you can still donate through her Just Giving Page.

If you feel inspired and would like one of our fab new fundraising packs just get in touch with us on info@cerebra.org.uk

Watch Cara reach the 4K mark on the treadmill:

Innovation Centre’s spinning pod a big hit with Curtis

Curtis and his spinning pod

Curtis and his spinning pod

Louise recently contacted our Innovation Centre after seeing a post on our Facebook page about the spinning pod chairs that the team had created. She knew one would be perfect for her son, 11 year old Curtis who has Charge Syndrome. She told us their story.

Curtis has Charge Syndrome which affects him in lots of different ways. It affects his development, meaning that he can’t walk and talk and he also has many sensory issues. He is partially sighted and has a cochlea implant because he is partially deaf. He is unable to tell where his body is in space and because of this, he has balance issues.

Longer term, Curtis has heart and lung problems and is on long term ventilation after needing a tracheotomy. He has night carers who have been a big help as Curtis isn’t a good sleeper, although he goes through patterns with his sleep and it has been helped with medication.

Curtis craves constant sensory input which means that he often gets frustrated and can lash out. His 4 year old brother Oscar is great with Curtis but it can be difficult for him, especially if Curtis is having a bad day.

Oscar enjoyed the box

Oscar enjoyed the box

For a while now, I have been looking for something to help Curtis to feel more grounded. We had a very old spinning chair that Curtis would spin on all day if he could because he doesn’t get dizzy but as he was getting older, the chair was getting less safe for him to use and I was worried it would break. Then I saw pictures of the spinning pod chair that the Cerebra Innovation Centre had created on Facebook and knew it would be perfect for Curtis!

I contacted the team and the day the chair arrived, Curtis was absolutely over the moon with it! Oscar even loved the box that it came in! The pod now makes up an important part of Curtis’ day. He can touch the floor and spin himself which gives him some independence and it also grounds him so the benefits have been huge.

The Innovation Centre have been great. A lot of things are designed for younger children and often there’s not a lot available for older children but they helped to fill in the gaps. There are so many challenges we face and it’s nice to know there’s someone there to help.

You can find out more information about the Cerebra Innovation Centre on our website. If you would like to find out how you can get a spinning pod like Curtis’s, contact the team at cic@cerebra.org.uk.

Jonas enjoys sensory toys from our library

Jonas with fibre optics

Jonas with fibre optics

Jonas’ parents recently contacted our postal lending library to borrow some sensory lights. Mum Jolanta and dad Andrej told us their story.

”Jonas is a 2 year old boy who has CDKL5 disorder. CDKL5 is a rare x- linked genetic disorder that results in early onset, difficult to control seizures, low muscle tone and severe neurodevelopmental impairment.

Most children with CDKL5 do not walk, almost all do not talk and they have a range of other symptoms. Sadly Jonas has a cortical visual impairment (CVI) and can’t hold his head up yet. Unfortunately there is no treatment  for his condition.

As a parents we are looking for all available options how we can help our son to enjoy life as much as possible. At the same time we want to improve his vision and that is a reason that we decided to try to borrow the fibre optics from Cerebra library.

And it was amazing! Jonas enjoyed fibre optics so much and it helped his therapy to stimulate his vision”.

You can find out more information about our postal lending library on our website or by emailing janetp@cerebra.org.uk.

 

Travel insurance covering children with disabilities

travel insurance covering children with disabilities

At this time of year, one of the questions coming in to our helpline is about travel insurance that will cover children with pre-existing conditions. Many people have travel cover potentially included with a service they already use, such as car insurance, a membership subscription or a bank account, but they have looked in the small print and found that pre-existing conditions are excluded.

Should you be in this position and wish to know where to find an insurer that will provide cover, the list below is a place to start. Some of these companies only cover for certain conditions.

Listing these companies does not imply that Cerebra recommend any of them, only that we know they are there. Please make sure you check that they are suitable for your needs.

Insurance companies

A holiday advice organisation that may know of other insurers is Tourism for All.

Other things worth thinking about before travelling

Government advice about travel with disabilities, which includes insurance, booking, taking medication abroad, law, access, finance, airports and so on.

For travel in the UK, the National Key Scheme for access to toilets for people with disabilities (not all toilets are kept locked, but for those that are), http://nks.directenquiries.com/nks/page.aspx?pageid=10&tab=National+Key+Scheme&level=2 and

For travel in Europe, a European Health Insurance Card (EHIC) is needed. These cards should be free of charge but they go out of date, so if you already have one it is worth checking that it will still be valid when you travel.  Further details: http://www.moneysavingexpert.com/travel/free-ehic-card.


This article was first written in June 2015. Updated August 2018.

Cara draws winning summer raffle tickets

Cara with CEO Chris Jones and some of our fundraisers

Cara with CEO Chris Jones and some of our fundraisers

On 25th July actress Cara Readle, who is one of our fabulous ambassadors, drew the winning tickets for our summer raffle.

Cara is currently in training to complete a duathlon challenge for us so Cerebra staff got into the spirit of the occasion and dressed up in their best workout clothes!

We hold two raffle draws every year, a summer and a winter raffle. You can find out more information about our raffles including how to purchase tickets and past winners here.

Cara to take on duathlon challenge

Cara Readle

Cara Readle

Swansea born actress Cara Readle, famous for her role in ‘The Story of Tracy Beaker’, will be taking on a duathlon on 20th August to raise money for Cerebra.

The 27 year-old, who was born with Cerebral Palsy, has been an Ambassador for us for several years and has never let anything stand in her way. Back in 2014, she completed a 2 mile walk in Mumbles from Black Pill to Verdi’s – a huge achievement.

As well as having many acting credits to her name already, Cara also graduated from the University of Wales Trinity Saint David with first degree honours in Performing Arts.

Cara’s latest challenge will see her embarking on a 5km walk on a treadmill and a 5km cycle on a static bike, all taking part over the course of a day at Xcercise4less gym in Swansea.

Cara said: “I have set out to do something that I know I will find very challenging but I wanted to challenge myself in order to raise money for Cerebra. It may take me all day, the walking will be the hardest part for me but I will compete it. I have started training for this and I have lots of support!”

Cara took time out of her busy training schedule on Wednesday 25th July to draw the winners for Cerebra’s summer raffle. Cerebra staff got in to the spirit of the occasion by dressing in their best workout gear!

You can sponsor Cara through her Just Giving page.