George was our first born son. He took a week to enter this world and finally arrived on 29th February 2008. He was perfect.
As he started to reach development milestones, he seemed a little slower than others, but we were advised that boys had a tendency to be slower, all children develop at their own pace and there was nothing to worry about. So we didn't think anything of it. As a toddler, he tripped up regularly and again we were advised this was normal. Life progressed, and it wasn't until his brother Jack was born two and a half years later and reached the same milestones that we started to wonder further.
George developed large calf muscles and people would comment to us what amazing muscle definition he had. We have always been a sporty family and spent a lot of time outdoors, swimming etc, so didn't think anything of it. Little did we know that this was such a key sign.
George progressed through Infants school with some slower learning challenges and lacked concentration but again we were advised that boys have a tendency of this so Life continued. It wasn't until George had just turned 8 and in his first year of juniors that we started to feel that he was struggling more and needed futher help. He was getting more and more fatigued, started to complain of pain in his legs, was walking more on his toes, and was struggling even more than before with stairs and getting up from the floor. We had also been to see George in his first junior school sports day and it was very evident that something was wrong, and he couldn't keep up with his peers. The school raised concerns too about his overall physical ability. We had taken George for a course of cranial massage at a local osteopath to help with his concentration and fidgeting which had also been an ongoing problem since starting school. This seemed to help a little, and we asked the osteo to check his hips out after discussing the symptoms with him. His hips were fine, although the osteo seemed to also be concerned and asked us to see our GP as he thought it could be dyspraxia, and we started to research this.
George was first seen in Basildon Hospital in September 2016 as we had been referred with our concerns and that of a local physio friend. Our first appointment with Basildon Hospital was 14th September 2016, where George was physically assessed. We were comforted to hear that the consultant didn't believe it was neurological and felt a bit more relaxed, although he sent George for a blood test and wanted us to see a paediatric consultant for a second opinion. The next appointment was 3rd October. Our concerns in between were growing as we decided to look up every abbreviation listed on the blood test request, and the reference to 'Gowers test positive'. We had never heard of Gowers test until we looked it up on the internet! The more we researched on the internet what the blood test was testing for, everything pointed back to Muscular Dystrophy. As heartbreaking and painful as it was, we trawled and trawled. Everything about George's life journey physically and learning wise was making total sense, but surely it couldn't be Duchenne we thought! As most boys were diagnosed much younger we clung on to hope that it was a better outcome! On 3rd October 2016 we were back at Basildon Hospital for the blood test rests and second opinion. The Creatine Kinase level in George's blood was significantly elevated which confirmed Muscular Dystrophy, and we were referred to Great Ormond Street Hospital (GOSH). We talked to the consultant about what we had researched and tried to find any reassurance from her body language. Could it be Becker MD I asked?! She nodded and said a further genetic blood test would be required to confirm a clear diagnosis, and George would now go under the main care of Great Ormond Street. In mid October we received a copy of the Basildon Paediatrician letter to GOSH with the words 'Diagnosis: Possible Duchenne Muscular Dystrophy'. Heartbroken, our life journey changed from that point on.
On 9th November 2016, our world was completely shattered when George was diagnosed with Duchenne Muscular Dystrophy .
Even though we knew something was wrong for some time, we could never have prepared ourselves for this devasting news. In that split second, our world turned upside down! How could this be happening to our special boy George. He is so innocent, so loving, so kind, so caring, such a happy little boy. Why him? What has he done to deserve this? What have we done to deserve this? What will this mean for him...for us as a family? We are going to loose him....our beautiful boy, to this dreadful disease!! How long have we got...nobody can tell us, but the outlook is bleak and the average life expectancy is mid to late twenties.
I was totally heartbroken. I cried, and cried and cried. I was in shock and absolutely devastated. I felt overwhelming sadness and sudden emptiness of grief. Our son was slowly dying. We are going to loose him. It was like a sudden death sentence. It was ripping our hearts out and there was nothing we could do to control getting him better. Sleeplesss nights thinking of everything and nothing...trawling the internet day and night wondering why there was no cure.
How would we explain things to him and how will we all cope helplessly watching him deteriorate. Lots of things from his early childhood sudddenly made a lot of sense. Struggling with stairs, running, and other physcical activities, and regular falls, but Duchenne Muscular Dystrophy, nobody had suspected this before. Our lives had suddenly changed forever!
All our family were naturally devasted too, but the one thing that Duchenne Muscular Dystrophy can't take away, is the sheer amount of love and care we all have together which will keep us as strong as possible for George.
After his diagnosis life quickly developed into endless weekly hospital appointments and tests, physio assessments, occupational therapist assessments in school and at home for adaptions and support needed, night splints, steroids, muscle biopsy, learning assessments and support, school meeting to support an EHCP, endless paperwork for Disability Living Allowance, disabled badge, wheelchair assessment to support George when he needs to rest, and steroids!
George had a muscle biopsy in January 2017 to find out how much dystrophin was in his muscles as he appeared stronger than the average Duchenne case and later in his diagnosis. Amongst all the medical and formality mayhem, we had to quickly come to terms with our new journey (as much as you can come to terms with DMD). I suppose it's more acceptance! We stopped looking at the internet and longer-term impacts. We now live life by the month and we try to enjoy it even more than we did before, creating fond family memories together. We had to be strong for George, and his brother Jack. We explained age related bits of the condition to George to help him understand what is happening to his legs and why they don't work as well as his friends. We gave 'it' a name, and explained he was born with it, so his friends couldn't catch it. We explained that there is no cure and the scientists are working hard to find one. George said he wants to be a scientist in future! He is such a strong boy. He listens and asks questions and we talk around feelings through 'mood cards' every day to help him explore emotions.
He is starting to slow down at home and school, and cant keep up with his friends. It's heartbreaking when he cried because his friends kept catching him in the school playground when playing 'IT' and George unable to catch anyone else. We said his friends will have other things that they are not good at too, and besides, it makes him popular! George is getting more frustrated, and falling a lot more frequently. His toes have started to turn inwards now too. His right shoulder has started to weaken. Arrangements are being made for a special chair for George to sit on at school to be more comfortable, and a chair lift for the five or six internal steps in the school. He has a special laminate card he has made to make this visible to the teacher to answer questions as he is unable to put his hand up in class without support. He sits on a bench for school assemblies so he doesn't have to sit on the floor, and he has a laptop to use for longer pieces of writing and does his school homework on the PC to also support his pain when writing.
We have to take George in the car a lot more now rather than walking places locally. Our house is being assessed for adaptions required, and we have quickly started to learn that we have to fight for everything on this new Duchenne journey!
George has started karate and horseriding, both of which he loves, and he is keen to learn to play the guitar. He still has life ambitions, he still tells us funny jokes, he still fights with his brother, he still has a great cheeky personality, and he is still our beautiful son George, big brother to Jack, and little brother to Lewis and Daniel. It's still early days for us, although we can see changes happening on our new life journey.
We have tried to turn our grief and helplessness into determination and commitment to help raise funds to find a cure. It's the only thing that you can control in this dreadful devastating disease, and in between the appointments and bad days, we will fight for our son, love him endlessly and provide him the best possible life memories and support that we can.
We came across the charity Harrison's Fund through one of its family ambassadors, whose son was diagnosed three years ago and his sister attends the same school as George's brother. They started in the same pre-school nursery and as parents we became friends before either of the boys was diagnosed with Duchenne, which is very ironic! The charity funds research into Duchenne and is our only hope for George and boys like him for a cure or access to better treatments. It has been great to have someone local to talk to, listen and be there for support.
Kerry Shippey, 45, Billericay,
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