January 2015
Our names are Dawn Bean, 43 and Daniel Hunt, 37. We are lucky to be the proud parents of Joseph (Joey) Hunt, 2 (02.01.2015) who has a super sister, Daisy, 14 and a brilliant brother, Oliver 13.
We all live in Hailsham, East Sussex. I’m a teacher and Danny is a contracts supervisor for a mechanical heating and ventilation company. Unfortunately Joeys health and subsequent medical issues mean that I had to stop working in October.
Joey has a condition know 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!) it also showed areas of polymicrogyria and abnormal white matter. Joey is as severely long sighted as you can be and wears funky glasses full time.
This has all resulted in global developmental delay. Joey’s development took many steps back last August 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 via c section at 39 weeks, he passed meconium and ended up on SCBU 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 and E etc 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, OT etc. Within a few weeks we became less convinced! It was clear to is 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!
We have been attending conductive education which has been fab for him and helps us stretch him and exercise him.
He is unable to use his hands or arms much and we would love to see something to enable him to move independently, or eat and drink independently. He currently also does not talk but does understand a lot and is starting to sign.
Good to meet you all!