Samuel discovers freedom with his Oxy-gem

Samuel and his oxy-gem
Samuel and his oxy-gem

Samuel’s mum Joceline recently contacted our Innovation Centre. As a member of a parent group on Facebook, she had seen how another child had benefited from our Oxy-gem. She knew that it would be perfect to help Samuel.

Three year-old Samuel has Down’s Syndrome and small airways disease. This means that he is on oxygen 24/7 and whilst he can walk, he could not carry the weight of his oxygen cylinder so his mobility was extremely restricted.

Joceline knew that the Oxy-gem could greatly improve Samuel’s independence and the Innovation Centre team were happy to help!

We sent Samuel one of our Oxy-gems in time for him to take it for a test drive around Blenheim Palace!

Joceline told us: ‘It was the first time he’d been able to participate on foot, rather than in his buggy.  You can see the excitement on his face.  The trolley went for a good 20 mins, on the path, on the grass, through the leaves….it was a life liberating day for him. He also uses it at school twice a week and it’s brilliant.  

Thank you so much for your help with this. I cannot begin to tell you how valuable the Oxygem is to us.  It has freed our son from the shackles of a buggy and helped him develop his independence and core strength and physical stamina.’

If you would like to find out how the Cerebra Innovation can help you, whether that’s with the Oxy-gem or if you have another challenge for the team, please get in touch! Email [email protected].

Can you guess our most popular post from 2018?

We’ve crunched the numbers, we’ve checked them twice and now we can reveal our most popular posts from 2018.

5. Is your child getting unsuitable continence products?

If you’ve been told that your child can’t have the continence products they need, you can use our template letter to make a complaint.

4. What can I do if my child needs me to be there in order to sleep?

This snippet taken from our sleep guide can help you if your child can’t sleep alone.

3. Jonas enjoys sensory toys from our library

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

2. Travel insurers covering children with disabilities

If you’ve had trouble getting travel insurance companies our list of companies who cover preexisting conditions can give you a place to start.

1. Sleep tips and techniques

Our sleep tips and techniques booklet took the top spot. It’s packed full of helpful advice to help your child get a good night’s sleep.

Cerebra to benefit from Co-op Community Fund

Vanessa with Dylan, Ryan and Taran
Vanessa with Dylan, Ryan and Taran

This year we have been chosen to benefit from the Co-op Local Community Fund.

At a time when funds for charitable organisations are becoming more difficult to access, we are incredibly grateful for this opportunity to make real difference.

We are raising funds so that we can continue our work to help families who have a child with a brain condition to discover a better life together. Families who have a child with a brain condition such as autism, cerebral palsy or Down’s Syndrome face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome.

Support from the Co-op Community Fund will help us to carry on supporting families like the Hoopers from Kidwelly. For seven-year-old Ryan Hooper and his family, getting a good night’s sleep was a constant struggle until they discovered Cerebra.

Ryan has Down’s syndrome and the condition often causes poor or disturbed sleep, something that affected him and had a knock-on effect on the whole family. When his mum, Vanessa, heard a representative from Cerebra speak four years ago at a local Down’s syndrome support group, she was keen to find out more about how the charity could help her son. Helping him to get a better night’s sleep was at the top of her wish-list.

Vanessa says “Cerebra’s sleep service was invaluable to us. Whenever I called they’d answer my questions and reassure me I could cope. The sleep practitioners helped us countless times and were able to get us into a routine, which gave some normality to our daily life”.

To help raise the vital funds, we’ll be relying on Co-op shoppers. Every time they buy Co-op own brand products they get a 5% reward for themselves, and a further 1% goes to local causes like ours. Co-op members can decide which local group they would like to back by going on-line at www.coop.co.uk/membership. We really hope that people will visit the website and choose to support us.

If you’re not a member and would like to support us, you can join at your local store or online at www.coop.co.uk.

When a community comes together we’re able to achieve great things, so we hope you can help promote our project.

Watch Vanessa explain what it’s like to have a child with a brain condition who doesn’t sleep well:

Cerebra and Cardiff University collaborate to advance support available to families

Hello, I’m Lowri and I’m really happy to be joining Cerebra to work on an exciting and new Welsh Government funded project, as part of a Knowledge Transfer Partnership between us and Cardiff University. Before joining the team, I worked for the National Centre for Mental Health (NCMH). The NCMH is a team based at Cardiff University, and they research the causes of mental health conditions in adults and children. Speaking with parents of children taking part in the study, it was clear that families often feel the level of support is lacking after they receive a diagnosis. This project aims to address this important issue.

We will be working with the Cardiff University Division of Psychological Medicine and Clinical Neurosciences in order to improve the helpfulness of information and the services which families and children living with rare genetic disorders struggle to access. We will be focusing on improving mental health related information available to families.

Rare genetic disorders are caused by changes in a person’s DNA (their chromosomes). These changes vary in size. That means they can either affect a very small part of someone’s DNA, or the changes can be bigger and affect a larger area. Some rare changes to our DNA can lead to serious impacts on our physical health, brain development and affect our mental health too.

These disorders are rare because individually, they are not seen very frequently in the general population. However, if we looked at the whole population altogether, 1 in 17 people in the UK will be affected by at least one of these conditions, that’s 3.5 million people! One of the most common disorders is called 22q11 Deletion Syndrome (also known as DiGeorge Syndrome), with 1 in 2000 new born children being diagnosed. Another, much rarer syndrome is called Kleefstra syndrome, and occurs in less than 300 in the UK.  Cardiff University are currently researching these conditions in order to answer the question often asked by parents: “What does this diagnosis mean for my child, and where can I get help and advice?

Research has shown that people diagnosed with these rare genetic disorders often experience difficulties with their mental health, yet families have trouble finding helpful information and struggle to access mental health and other services for their child. We believe it’s important that everyone can access useful, high quality information about mental health conditions, based on the very best evidence from research.

We aim to work with medical services, other charities, as well as families with lived experiences to get a well-rounded idea of what services currently offer that is really helpful, what is unhelpful, and what people think could be improved. We will also ask what they think about the availability and quality of information about developmental and mental health conditions in children and young people. We hope that doing this will lead to important changes in services in order to equip people with key information and empower families and children to make informed choices that are best for them.

Myself and the rest of the team involved feel very passionate and committed to this project, and hope that it will make positive changes for families in the future.

Joshua’s Transition Part 1

Emma tells us about the period of transition that her son, 17 year-old Joshua is about to face and the services that are available to help the transition. 

Joshua

I have always feared Joshua becoming older as it felt like a step into the unknown. Every birthday sounded so much older than the year just gone, the jump from 9 to 10 years old for instance seemed enormous, but of course it wasn’t at all, it is just a number. Now the jump from 17 to 18 , where we are approaching now, that is a significant change. In the eyes of the law, Joshua will become an adult next March, when he turns 18. I cannot keep my head buried in the sand about this one, this change is approaching rapidly and so I need to face it head on.

“I don’t need to think about that yet surely!”

Even as young as 15/16, health and education professionals referred to ‘Transition’ and I tried hard to ignore them and joke that I did not know what would happen next week, never mind that far ahead. But the references to transition did not go away, they gathered pace and they cropped up when we saw his neurologist who would be handing him onto an adult neurologist, our children’s epilepsy nurse who has taken care of his seizures since he was 4 years old would be passing him on and in his Education Health Care Plan meetings, when they would ask what we wanted Joshua to do when he left school at 19? I wanted to shout out loud “Stop it, he’s only 16… I don’t need to think about that yet surely!!” We had finally got to a comfortable place – he was in the best school for him, we had found respite provision that suited us all and we had established doctors who knew and understood him – and now, because of an anniversary, everyone wanted to throw all that we had carefully built up into a big bag and shake it up. I resisted it with all my might.

Opportunity

Then something changed this May and I began to relax and embrace the change, to see it as an opportunity rather than a threat. This change was due largely to one person: a social worker who was allocated to us from ‘Futures Plus’, who would represent Joshua once he was an adult. She paid us several visits, getting to know both us as his parents and Joshua in his home, school and respite session. She always delivered what she promised to do and most importantly, she listened, giving us the time to explain how we felt or how things are, she even saw my husband and I separately, which  nobody has done before, to explore our very different perspectives.

Respite for young people

In my mind I had envisaged adult daycare and respite services as being grim places, where my 18 year old son might be mixing with 80+ year old dementia sufferers, with the staff trying to juggle their very different needs. Our social worker immediately explained that there were facilities specifically for young people  and so I relaxed and decided that Joshua might actually enjoy the next step of his life, rather than it being a necessary evil. She visited all of the local adult respite places and even rated them from her own perspective, but encouraged us to visit each one to make up our own minds. I am confident that she too is determined to find somewhere suitable for Joshua’s needs. We have prioritised Respite as his current facility cannot have him beyond 18, whereas he can stay at school , in 6th form, until he is 19 so we have an extra year to find daycare solutions. So far we have looked at 2 of the 4 in our local authority area and I plan to get round the others this month. Joshua had to go out of area for his current short breaks and we have been reassured that if there is nothing suitable locally, we can argue that Joshua’s needs can only be met by a provision out of area. So far I have to say that I have found nothing that comes close to his current provision. I will not compromise, he will not be going somewhere mediocre just because it is local. I now know what I am looking for, as we have experienced the best, and I will keep searching until I find it.

Change

I have never been good at change, it always seems to be forced upon us just when things are settled. I can recall begging Joshua’s nursery school head teacher if he could stay with her until he was 16 please. She replied kindly, “No Emma, he can’t, he will get to be too big for the furniture here”. We made the move to mainstream primary, then to a special school and then to his current special school so, given that I hate change, we have done a fair amount of it in Joshua’s 17 years and of course, we survived. The difference is that this time we have a social worker by our sides who will help us to negotiate our way through this mysterious maze and help to pull us through – I am sure.

As we approach March 5th, I will update you on how we are handling transition and will outline the highs and lows that we are bound to face. I sincerely hope that our experience may help some of you who might also have a son or daughter who is approaching this critical age. I do not want to scare those readers who have ten year-olds now, but this Transition will come much faster than you think, so it is worth thinking about it sooner, rather than later. If I had read that in 2011, I know I would have ignored that advice, thinking that it was not relevant to me, but I would urge you not to be an ostrich like I was. Perhaps you can learn from my mistakes, so that you can hear the ‘transition’ word without a shudder.

You can read more from Emma in her article ‘Introduction to us‘ and on her blog Ups and Downs Mum. If there are any topics you would like her to write about let us know in the comments.