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Our Story,

Our Harry

Harry celebrated his 5th birthday in August 2013 and like many 5 year olds enjoyed his party running round with his friends. He's a very cheeky chap who will try and get away with anything using his smile. He's into everthing currently playing football after school, swiming and takes great delight in winding up his 7 year old brother Jack.

It was often pointed out that Harry's calves and legs were bigger than most children his age so family and friends would joke that Harry will soon find his way to the rugby pitch. Unfortunately Harry couldn't quite keep up with his friends when running so after various GP appointments Harry had a blood test.

 

When everything changed

On the 1st June 2013 we were told the results and our world fell apart. We were told it was serious and more tests were needed but it was suspected Harry has Muscular Dystrophy. Two months later following a muscle byopsy it was confirmed Harry has Duchenne Muscular Dystrophy. So now we know by his 10th birthday it is likely he will be in a wheel chair and his upper body will then begin to shut down due to this rare and painful condition leaving him locked inside his own body. As a muscular degenerative disease eventually his heart and lungs will fail, almost certainly before he is 30. The most difficult part - there is no cure, it will happen and it is 100% fatal.

There is a large amount of research currently taking place in the UK and abroad but as yet the only treatment is a steroid program to help manage the disease.

 

Support

Thanks to the support from friends and family we have launched this website help4harry as a focus point where we keep you updated on Harry's progress, raise awareness and most importantly raise funds to help those at the forefront of the research into treatments and hopefully one day, a cure for Duchenne Muscular Dystrophy. 


Enjoying the 'now'

Whilst it is impossible to forget what the future holds for Harry we must not forget how Harry is now. Concentrating too much on the years to come will just mean we will all miss out on fun and laughter today and tomorrow. If you spend any time with Harry he will make you smile, he's the cheeky chappy and if you're lucky he'll end up smacking your bottom and running rings round you... :)  


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KEEPING YOU POSTED...........

January 2014..

After a great Christmas with family and friends we knew the New Year would hold fresh challenges, the first of which was night splints.

When you or I sleep at night our feet naturally straighten but for Harry this means his calf muscles weaken forcing him to walk more and more on his toes which ultimately would quicken his loss of mobility. To help boys with Harry's condition night splint keep his feet at a right angle to his leg. It's essentially like a boot but with the front cut away.

We were very fortunate under our NHS care to have night splints specially made so Harry could even choose his own colour and designs on the cast. Two weeks after playing with plaster his blue "Night Wellies" with rockets and spaceships on were ready.

It's not been easy placing Harrys legs in his splints each night and it's the first physical thing we've had to do which makes our whole situation very real. Harry has been great, showing his friends his new "night wellies" and even taking them into school for show and tell. Most nights at the moment he wears only one so we alternate them but it does mean we are often up in the night when he wakes or if he wants to get out of bed. He's slowly getting use to them and we have to accept that they are helping keep him mobile for as long as possible.

Late Jan 2014..

Steroids..... We knew these were coming but again actually starting them proved another very difficult day. As we have said many times the care and support from the experts and consultants at Great Ormond Street has been fantastic but what we hadn't appreciated at first was when it comes to steroid treatment nobody makes the decisions for you. They give great advice but the decision to give Harry steriods, how often to give them and which ones to give was entirely down to us.

There is no right or wrong but after a lot of research and discussion we decided to start a program of 10 days on and 10 days off. This tries to get a balance between gaining the best benefits from the steroids but also trying to manage the many side effects. So early one morning we started, 3 tablets every morning for 10 days. In order to get the best benefits Harry has to try and swallow them whole. Not easy for a 5 year old but with lots of encouragement and a few pieces of banana later he managed his first 3 tablets. Not entirely sure they went down whole but he was pleased with himself all the same.

A couple of months on and were now just finishing his third lot of 10 days on the tablets. The novilty is certainly wearing off but he can now take each tablet with water or milk and swallow it whole. Some side effects are starting to show. Harry was always been a good eater but now he is always hungry and at times gets very angry but already there are benefits too. His running is better and he does appear to have a little more energy. The reality is these small improvements are only temporary and at the moment the inevitable will still happen but with recent developments and significant recent changes in the law new drugs and treatments maybe available a little sooner......for now we'll just keep enjoying the fun and laughter we have as a family today and tomorrow.

November 2014...

Well it's been a while since we've updated this. As we all find, life has been busy and time flies past far too quickly!!!

 

Harry has now been on Steroids for nearly 11 months. The benefits are still definately there, his walking is good and he still has no problem climbing stairs. He is swimming, playing a bit of football with his brother Jack and loves riding his bike BUT he us getting slower. His friends run much faster than him and this becomes very apparent in the playground. He can't keep up with his friends and gets very frustrated, something we know is only going to get worse. The steroids have also effected his behaviour and moods even more now. To be honest we don't know how much of it just Harry and how much is down to the Steroids but he can get angry and frustrated in seconds which usually ends up with him lashing out. We've learn't that boys with Duchenne do have a slightly different wiring system in the brain and whilst it is difficult at times sending him to his room or sitting him on the stairs is never going to work - it only escalates things! But we're not perfect and by no means are we perfect parents. He does get sent to his room and told to sit on the stairs but what really has been effective is just talking to him. Often by talking we find something has happened as school. perhaps in the playground. He's been called slow, or told he can't play a game because he can't keep up. Often this is the underlying reason for bad behaviour later on. - It's not easy, we're still finding our way and I'm sure there are times he's making the most of it!!!

 

We've also just had our assessment at Great Ormond Street. Harry enjoys the day out, a train ride, an adventure on the tube and then games with the physio. Lung function tests, physio and various scans all showed Harry has made a slight improvement since starting steriods and this can only be good. His body has reacted well to them so for now the benefits far out way the side effects.