Our Special Boy Joey 

"We are lucky to be the proud parents of Joseph (Joey) Hunt, 2, who has a super sister, Daisy, 14 and a brilliant brother, Oliver 13.

"Joey has a condition known as congenital Cytomegalovirus (CMV.)
As a result of this condition he has quadriplegic Cerebral Palsy, resulting in severely limited use of his hands, arms, legs and trunk. He also has a moderately large arachnoid cyst on one half of his brain. Unfortunately his MRI indicates that he will probably suffer from epilepsy (Hoping for miraculous avoidance there!) Joey is as severely long sighted as you can be and wears funky glasses full time. He is currently undergoing audiology testing and appears to be deaf in his left ear.

"This has all resulted in global developmental delay. Joey's development took many steps back in August 2016 and we haven't quite regained all our skills such as waving and pointing yet but we are working on it. Joey doesn't sleep well which doesn't help matters! 

"When Joey was born he was a true lifesaver for our family. When I was 23 weeks my eldest son, Callum, 17, died in a tragic accident. Joey kept us all going throughout the worst times imaginable! When he was born he helped to start to heal us all slightly, myself especially. 

"Joey was born by cesarean section at 39 weeks, he passed meconium and ended up on Special Care Baby Unit with hypoglycaemia and possible infection.  He was treated with antibiotics and we were home within a few days.  Right from the start we had worries that were continually disregarded by doctors.  Mainly jittering and appearance of fitting for the first 4 months.

"Finally at 4 months after numerous attendances at A & E we were told he had a mild left sided hemiplegia and by the time he started school then he would be fine!  Initially we felt relief at being listened to, not overly worried as we were told it was ultra-mild and would barely affect him! We set the ball rolling for physio, occupational therapist etc.  Within a few weeks we became less convinced!  It was clear to us that there was a lot more going on.  He had issues with reflux, breathing and eating to name just a few.

"Finally in October 2016 we were admitted to the Evalina in London for a few days where we learnt a lot more about our son and his conditions. Scarily we found out that his swallow was unsafe! I had been saying this for a while but was made to feel paranoid! At last he had thickener for milk and juice and I don't have to feel guilty about puréed everything! I do keep trying small bits of texture however. Not with a lot of success at the moment!

"Coming to terms with his recent diagnosis hasn't been as difficult as you would imagine as we were told to expect much worse so in some ways this is a relief. It's hard to think about what could have been as this is what we and he have now. We have no idea what the future holds so we try to be as positive as possible. I'm gutted for him and Dan that they won't be playing football together but then again maybe they will, it may just be slightly different! 

"We are so lucky that Joey is so happy and chilled! He's always laughing and smiling. He has got a strong will that we are really starting to see! He just wants to watch the world go by, watch a bit of Peppa Pig and walk in his upsee, unfortunately for him we have other ideas! 

"I heard about the Dame Vera Lynn Children's Charity through word of mouth. We have been attending Conductive Education in Brighton since June 2017.  We also regularly go to hydrotherapy at Chailey Heritage. We are so thrilled to be able to take part in sessions - they are incredible!  The team have high expectations of Joey which he is capable to reaching.  He does complain and battle against some of it at the moment but he is doing that with everything, another good sign!

"Joey has done so much in the last few weeks, each week is different yet building upon existing skills. His arms are already so much loser thanks to the fabulous stretches we were shown! He is also able to focus more on objects and people.  For me there is no better look than the look of pride I see on his face when he realises he has done something good!  (Even if he displays it with crocodile tears at the same time.) Listening to advice from the team and other families that we meet motivate us to try and encourage his independent skills. 

"We have been made to feel so welcome at the Dame Vera Lynn Children's Charity, everyone is so kind. We are so lucky to have the support of the centre for this next stage of Joey's journey! I feel that we will make some amazing progress with their help, watch this space! They have a superb centre with fabulous equipment and a Conductor who plans a varied and challenging programme designed to stimulate, motivate and progress!  I feel we will meet many interesting people through the coffee mornings and talks that will inspire and motivate us to empower Joey.

"My advice to other parents embarking or already on a similar journey would be to begin Conductive Education immediately! We kept ourselves to ourselves for the first 18 months with sporadic attempts at regular baby groups, we worked hard and just struggled on. Another piece of advice would be to meet other parents, try and engage and involve yourself with others as having a child with a disability or several can feel extremely isolating and frightening at times. We know that we still need to do that more and we are getting there! 

"Finally a huge thank you to those that have helped us so far at Dame Vera Lynn Children's Charity, we look forward to continuing with you and we are so excited about how Joey will continue to progress."

Dawn Bean & Daniel Hunt

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