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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.

Nicola’s Story

Nicola and Alfie

We meet Nicola Tilson, our newest charity Ambassador.

“Hello, my name’s Nicola. I’m mum to two very beautiful boys, Sam, aged 10 and Alfie, who’s 4. I’m married to Lee and we live in Yorkshire with our chocolate Labrador, Honey.

Our youngest son, Alfie was born with a rare genetic condition called HHT (hereditary haemorragic telangiectasia). It’s a condition that can cause abnormal connections between arteries and veins and it can present differently from person to person. Unfortunately, Alfie became very poorly at 6 weeks old when they found he had a very rare complication of HHT. He had something called AV Fistula in the right side of his brain which had created a very large and fragile aneurysm (a sack of blood).

Alfie was taken to Great Ormond Street Hospital to undergo a life saving procedure but suffered bleeding on his brain. He spent almost a month in intensive care. Initially we were were told it was unlikely he’d make it and, if he did, he would suffer from severe disabilities.  Despite this, Alfie held on and when he was eventually woken up from his induced coma his recovery was remarkable.  Alfie went on to have this procedure a further four times before they could fully close off the blood through this AVM. All of this before he turned two.

Alfie and Sam

Amazingly Alfie’s development was truly wonderful, he hit all milestones early or on time and I think we all let out a deep breath after what had been a very frightening two years.  But at  2 1/2, Alfie started to regress. All the language he had learnt and used he seemed to lose,  he was reluctant to talk and he drifted off into his own world. It was a very worrying time and it seemed to take so long to get the answers we desperately wanted.

He was diagnosed with autism just before his 4th birthday,  I remember the lady giving us a big folder full of information and then off we went.  I didn’t understand autism, I didn’t know any one with autism,  I only knew what I thought I knew which turned out to be all wrong.  I would spend hours when the children were in bed reading and researching as much as I could on everything and anything autism related, hoping something would click, something I could use to bring Alfie back to us.

On a piece of paper in the pack was a website address for Cerebra. It didn’t say anything else but I thought I’d take a look.  I’m so glad that I did.  We were put in touch with Laura, Cerebra’s Regional Officer in our area. Initially her visit was to help us complete some forms but she did so much more.  She signposted support in the community, recommended sites where I could find sensory activities for Alfie and then pointed us in the direction of ABA (applied behavioural analysis).  She even loaned me her own personal book.

Laura, Sam and Alfie

Laura was so informed and understood us completely.  I was really lost and Laura helped me make sense of everything. Within a week of Laura’s visit, Alfie was asking me to play with him-this was huge! He had stopped doing this, preferring his own company.  One year on and I’m still in touch with Laura. She has helped us with understanding his education rights and the EHCP process and much more.  I tell everyone about Laura and Cerebra and just the massive difference she made to our lives.  I will be forever grateful.  Alfie still has struggles but is making massive progress every day.  He plays with me, his Dad and his big brother. His speech is improving and he is just much more involved in school and in home life. He is an absolute joy.

I started fundraising for Cerebra as a way of saying thank you. I made reindeer food at Christmas, organised book sales and raffles and have found homes for collection boxes. My family have also started trying to help with my sister and aunty both raising funds. I’m now looking forward to my new ambassador role and to finding new opportunities to raise funds and spread the word about the good work of Cerebra.”

Cerebra has a team of ambassadors, made up of parents, carers and professionals, who are passionate supporters of our work. If you’d like to become an Ambassador for us please get in touch with elainec@cerebra.org.uk

Today my daughter thinks I’m mean

One of our Ambassadors has kindly agreed to let us share her latest blog post on family life with two girls, aged 7 and 9, who both have dystonia and are being treated for mitochondrial disease:

“Today has been a toughy. Today my daughter thinks I’m a mean mum.

Now if this was from my lovely but quirky one I probably wouldn’t feel quite so bad, frequently I’m told I’m horrible & she doesn’t like me (usually after I’ve not twigged that today the sauce isn’t supposed to be mixed with the pasta even though yesterday it was!) Today it was from my more stable and concrete child. To be honest I don’t blame her.

Both girls have dystonia this affects them in different ways, but for A this causes her to have a tight calf, stiff ankle and variable tone in other parts of her body. She looks relatively fab most of the time, but to the trained eye her hopping, skipping gait, her rather slumped sitting posture & her writhing movements tell a different tale.

A has always been relatively OK about the things she has to deal with, she has done a few show and tells at school about new wheel chairs and even spoken to her class about what dystonia is.  Being in mainstream despite her challenges and part time hours has suited her well once we succeeded in getting her a full time one to one.

I am immensely proud of A’s gutsy nature, she embraces life and enjoys as many aspects as she can. Quite different than I was her age. Sometimes,though, the gutsy nature and being in mainstream can create tricky situations though.  A wants to be doing what her friends are doing, but when they play games running off in the field, actually then A can be left behind not able to keep up. Sometimes the boys in her class aren’t always very sympathetic when she doesn’t keep up in the queue. We’ve tried to help A develop her own strategies to deal with this, humour or witty comments back have often been the most successful. It’s about building up her resilience as sadly in the wider world this is probably the experience she will have to deal with.

My little Miss Determined came off some medicines for her dystonia last year as her neurologist thought they could have been causing her memory issues. Initially it didn’t seem to make too much of a difference other than a tremor when tired. But gradually we have noticed that she is stiffening up. Climbing and walking are becoming trickier for her and recently she has been complaining of pain in her ankle. We are awaiting splints and botox to try and help with this but in the meantime she has to deal with the discomfort.

Unfortunately wanting to be like everyone else has caused a bit of an issue this past few days. She is obviously in discomfort but when there was the opportunity to go to the local secondary she chose to walk. Whilst A can run and hop and skip around the playground relatively effectively the slower and more repetitive action of walking triggers spasms in her ankle and feet….cue wakeful night.

Today she was due to go to gymnastics. Having discussed this with a physio friend we came to the conclusion that perhaps avoiding jumping would be good. Unfortunately gymnastics involves a lot of jumping and the thought of not being able to do the class in its entirety lead to some seriously loud door slams! Watching her tears flow was enough to break my heart. I’m not sure which is worse seeing her in pain or emotional distress.  As she is nearing double figures I decided to put the ball in her court and let her decide for herself what she would do…..so to the class she went!

We have already got into the habit of arriving fashionably late as that means the girls miss out on the high energy warm up, but they then get to enjoy the important bits. Like most mainstream activities the other parents drop the kids and take the opportunity to have a quiet latte or do a quick Tesco shop while they have the opportunity. For me though, I’m the lone parent watching just in case there is any sign of a seizure or a flare up of their asthma. I’m not actually allowed to look like I’m watching as that would just be embarrassing apparently! So I stand there trying to pretend not to notice that A is limping.  Again to the untrained eye her smiles at the end of each activity covered the fact that she was in pain…but you can’t trick a mummy. Stood there alone my tears started to flow. I was rescued eventually by friends who gave me a grace period so the girls didn’t see my sadness. I borrowed a bit of A’s gutsiness to get me through the bedtime routine, but already we are paying the price for the fun and an extra dose of painkillers has been needed. What would I do next time? Probably the same because I think watching your child in emotional pain is perhaps harder than the physical”.

You can read more at Another Piece of the Jigsaw.