Tag Archives: grant

Cameron Gets Around on His New Scooot Seat

Louise French recently got in touch with us after she saw a Scooot Seat in action and knew it would be beneficial for her son Cameron. She told us their story.

Cameron was my third baby. He was born a healthy little boy, brother to Harris and Alfie, he made my family complete.  At 5 weeks old he became ill and was admitted to hospital where unfortunately he suffered a cardiac arrest which resulted in lack of oxygen to his brain and this resulted in an acquired brain injury. He spent the next 6 months in hospital.

The brain injury has meant that Cameron can’t safely swallow so he has had numerous operations and is now fed through a peg in his tummy.  He cannot communicate and is unable to sit up unaided and cannot walk.  It has been a long and hard 3 years looking after Cameron and coming to terms with his disabilities.  Cameron has very challenging behaviours which we believe are mainly due to frustration.

Cameron gets very frustrated as any 3 year old. He wants to run about and play with his brothers and other children but due to his disabilities he cannot. We had no means of Cameron moving about the room to follow his brothers and to get from room to room.  When playing outside Cameron just had to sit in his wheelchair and watch the boys.

Christmas 2015 we went to our Portage Christmas party were we saw a little boy on a Scooot Seat and we thought that maybe that if we could maybe get one of these Cameron would be able to join in with others while building his posture and potentially helping him to sit independently. Our Portage worker went out of her way to get us one to borrow to see how Cameron went on. Unfortunately there was so much demand for the equipment we were only able to borrow for a couple of weeks which wasn’t long enough for Cameron to get used to it.  We therefore put an application to Cerebra for a grant to purchase a Scooot. We waited patiently and we eventually got a letter to say our grant was successful and the Scooot was on order!

The Scooot got delivered about a month ago and to say it has opened up so many opportunities for Cameron is an understatement!  He is now following us round the room and joining in with his brothers when playing.  He has even started to sit unaided since using the scoot which is a real achievement for Cameron.  Today we took the Scooot outside in the garden and we played football, Cameron was so excited it was absolutely brilliant.

All I can say to Cerebra is thank you because you have allowed Cameron the ability to join in with so many things and without your assistance we may never have got the Scooot.

Thank you Cerebra.

The Scooot Seat was originally designed by the team at the Cerebra Innovation Centre (CIC) and is now manufactured by Leckey.
Julie sent us this lovely video of Cameron enjoying his new Scooot Seat.

Isaac’s Story – A Little Houdini!

Claire, Isaac and the whole family

Claire, Isaac and the whole family

Claire is mum to eight year-old Isaac. Here’s her story:

“Isaac is 8 years old and the light of our lives. His big brother Josh and big sister Miriam adore him. He’s non verbal, double incontinent, and doesn’t really have any understanding of the world around him. He’s very sensory. He puts everything in his mouth, loves water and greets the world with a smile, a shriek, a clap and a licky kiss. Developmentally he’s somewhere around one to two and has been for several years now. Doctors never really found out why. They’ve called it severe global development delay, profound multiple learning disabilities and now Autism.

Isaac does not believe in sleep, or rather he sees it as an unnecessary waste of good partying time! He’s awake a couple of hours each night. Sometimes he’s awake and miserable. Sometimes he’s awake and everything is hysterically funny.

We have been on a mission since he came out of a cot 5 years ago to find a way to keep him safely in bed at night. I pride myself on being a quite ingenious, can do person who doesn’t give up easily. Sadly those traits are obviously hereditary and Isaac, or Houdini as he’s sometimes referred to, has frequently beat us!

Mummy and Daddy make DIY safe bed frame out of wood with long curtains tucked under his mattress- score one to team parent. Isaac wriggles between the gap between the curtains, escapes at 2am, knocks the bath taps on and floods the bathroom. Score one to team Isaac.

Mummy adds poppers to the curtains to try to keep Isaac in his DIY bed, 2-1 to team parent. Isaac finds a gap at the foot of the bed, escapes, and we wake to find him in the kitchen grinning at us, sat in a puddle of squash someone left out, trying to gnaw his way into a tub of custard. Team Isaac evens up the score.

Through it all Isaac giggles and claps and seems thrilled to have us join his 2am party, and we scratch our heads and go back to thinking how we can next keep him safe and get some kip.

At home at the moment our latest combination of a wood frame and a fabric cover is working. He loves enclosed spaces and seems to need to block out the visual stimulation of his room to be able to settle,  but I know soon he will beat us again, it’s not a long term solution. He’s made very little developmental progress in the last 5 years and we’ve accepted one day we will be caring for a non verbal, incontinent, adult toddler with severe learning disabilities, no real understanding of the world around him – five foot something of pure mischief.  As he gets stronger and bigger it’s essential we keep him safe in his bed at night.

We get by with a sense of humour, supportive friends  and a lot of coffee! Going away on holiday however is a whole other ball game. The last time we attempted to stay in a hotel we had the management knocking on the door frequently throughout the night telling us they’d had complaints about a child running about and shrieking and clapping. That was pretty hard.

Today a letter came through the post though and the world became a better place! Our Cerebra grant for a safety sleeper had been confirmed. This amazing piece of kit fits into a small suitcase to go away with us, and folds out into a fully enclosed and very cool looking safe sleeping tent . It can go everywhere with us and when team Isaac next defeats our DIY home solution, instead of weeping over triple strength coffee and eating a whole packet of Jaffa cakes, we will simply put the safety sleeper up in his room as his permanent bed and know he’ll be safe. This is our forever solution. Everywhere we go, it will pack up into its case and come with us. And that will restrict the bathroom floods and squash/ custard spillages and all the other mischief he gets up to, to just the daylight hours!

Not in a million years could a family like ours afford the four figure sum for this incredible product. Without Cerebra’s grant, while we would single-handedly keep the world wide coffee industry afloat, we would be facing a pretty bleak and sleep deprived future and we have got pretty close to just giving up on attempting to take the children away on holiday and chasing Isaac about all night.  I will be watching the post, our game changing life changing safety sleeper should be delivered next week and we have booked to go away the week after for a few days to try it out. So from the bottom of our hearts, thank you Cerebra, for giving us a reason to hold onto our sanity and dare to hope that this is a big part of our happily ever after”.

Charlie Enjoys his new Trike

Charlie on his trike

Charlie on his trike

Cerebra’s grant scheme provides specialist equipment for children with brain related conditions so that they can enjoy life to the full – the same as any child.

Four year-old Charlie recently received a trike through a Cerebra grant and his mum Sarah told us how having the trike has transformed the family’s lives.

“Charlie was diagnosed with IP 36 deletion syndrome when he was two years old after a particularly astute paediatrician noticed some signs of the condition in Charlie.

His development was delayed and he missed many of his milestones so we knew that he needed to be checked.

Charlie is non-verbal and has severe developmental delay but he is still the happiest child. Even though he can’t communicate verbally, he still has great social skills and loves being out and about.

We are quite an active family and used to enjoy going out for bike rides and wanted Charlie to be able to enjoy the same freedom. Just because he has special needs – it doesn’t mean that he shouldn’t be able to enjoy the same activities as any other child!

We looked at getting Charlie a specialist trike from Quest 88 but the model that was suitable for Charlie’s needs was £2,300! That’s when we approached Cerebra for a grant to help towards the cost of the trike.

Since receiving the trike, Charlie has gone from strength to strength! It took him a little while to get used to the pedalling motion but now there’s no stopping him. He even giggles when we overtake people which is a joy to see!

Although he can’t communicate verbally, Charlie has learned a Makaton sign for bike and uses the Makaton sign for ‘more’ whenever we stop cycling to indicate we need to keep going! He will also pick the PECS symbol for bike when choosing which activity he would like to do. Then the normal sentence it a lot! It’s great to have something “normal” that we can all do together.

As well as the emotional benefits, Charlie’s Physiotherapist told us that the bike would develop his coordination and help to strengthen the muscles in his legs and core as he gets more independent with the pedalling motion. I can certainly see how the bike gives him lots of opportunities to develop physically.

Even though we steer Charlie when he is on the trike, the controls to do this are at the back so as far as Charlie knows, he is in control. This has greatly improved his confidence and has given him a little taste of independence – something that is invaluable.

We can’t thank Cerebra enough for the difference that having the trike has made for Charlie – and for the whole family.”

Sophie Gets Out and About With Her New Trike

The Hibbs family enjoying a bike ride together with Sophie and her trike

The Hibbs family enjoying a bike ride together with Sophie and her trike

One of the many ways in which Cerebra can help families is through our grants scheme where we part fund equipment that could enrich a child’s life.

The Hibbs family recently received a grant for a trike for their daughter, 9 year-old Sophie who has Cerebral Palsy.

It can be difficult for many families to get out and enjoy activities together if their child has a disability and the Hibbs’ wanted Sophie to experience the simple pleasure of going for a family bike ride.

Due to her physical disabilities, this would have been impossible for Sophie to do using standard equipment but mum Victoria contacted Cerebra and was awarded a grant towards the cost of a specially adapted trike.

The family haven’t looked back since! Sophie’s trike means that the family can enjoy the simple pleasure of cycling together through the countryside and has bought everyone closer together.

“Having this bike means, for the very FIRST time, we can go out for a FAMILY bike ride, all together.  This was previously impossible, since our other daughter mastered bike riding.

There is nothing more precious than seeing your child scream out with laughter and having fun.

We can now go out with friends and enjoy a bike ride together, without one of us staying behind with Sophie.

Whilst we’re out bike riding, people now talk to Sophie as they have something to discuss.  It is breaking down barriers and showing how important it is for our disabled community to integrate.

We have had so many comments on what a great bike it is and how much Sophie is loving it.  We are changing people’s attitudes to what disabled children can experience. This bike almost makes us feel ‘normal’!” Victoria Hibbs

If you would like to find out what sort of things a Cerebra grant can part fund, or apply for a grant, please call our parent support helpline on 0800 328 1159 or check our grants pages.