Our Story

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 10^th 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... :)

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.

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.

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.

Our friends and family.......

The last year our friends and family have been amazing. No family every expects to be in our position but whether is Duchenne Muscular Dystrophy or another rare life changing condition, it happens and we are constantly asked how we cope. The answer is simple, some days we don't. We have bad days, sometimes bad weeks but the one thing that always helps us through these times are family and friends.

We have been incredibly lucky. I'm sure friends often don't know what to say. I was talking to another Dad in our situation the other day and he was telling me how his son has really gone down hill in the last 3 months. He now finds getting up and down stairs almost impossible - what do you say??? For us there is very little that can be said but what our friends have actually done is what is so supportive. It can often be the little things, helping with the school run, having Harry for play days, picking Jack up from school when we've had to take Harry up to London for the day. I would say to anyone in our situation friends will want to know what they can do to help. They don't have to be out raising money pestering their friends for donations all the time - it's great when they do but just helping out with some of the simple daily things also makes such a difference and gives us, the parents a little time to oursleves as well.

January 2015

Christmas has come and gone.....we all had a great time and the boys loved it. Harry has now grown out of his first night splints (or night wellies as he calls them) and so has a new pair - leopard print this time! It's still difficlut to put them on him each night but he is so good with them. We do have to help him during the night and he often gets his legs tangled up in the duvet so nights are disturbed but on the whole he's very good at wearing them.

He is becoming much more aware of his situation now and this is something else we have had to tackle. For months we were torn over what we should tell him, should we tell him as all..?? How would he react...?? Nobody seemed to be able to help us with this one. The professionals said it's best we talk to Jack and Harry but nobody could really help with exactly what to say........what do you say......how do you start?? It was also becoming clear that others needed to know what to say to Harry including teachers and other parents. We never wanted Harry to remember the day he was told about his condition, we wanted it to be something he always knew about. As it turned out we really had nothing to worry about.

We started by just talking to Harry about his legs, normally when Jack his brother was around as well. Just saying things like "we are all different" some of us have to wear glasses, some of us are not very good at running......we're all different. We told Harry his legs are different and not as strong as other childrens. He asked if that was why he was slower, yes was the reply and he was happy with that and immediately just wanted to know what was for tea. We'd often ask how his legs were, just getting him thinking about it more and more. Later when talking about his legs we might drop in that he might need a bit more help as he gets older - again he was fine with this. Once when visiting Great Ormond Street Harry saw a wheelchair and asked if that would help him as his legs got weaker - a difficult moment but we swallowed hard and said yes.......was he bothered... not at all. We've since mentioned wheelchairs quite often is our conversations and Harry has always been fine with it. Just accepts it and moves on to somethings else. Now he loves pointing out what sort of chair he wants, we joke about the chaos he would cause racing around in a chair and at times it seems Harry can't wait! His older brother Jack is definately a little more reserved asking how Harry will get up the stairs? Will he have 1 wheelchair upstairs and 1 downstairs? The simple answer is we don't know yet but the important thing is he's happy talking about it.

Some people told us but we never really realised how accepting children are of things. They live for the here and now. I'm sure Harry has no real understanding of the implications of being in a wheelchair he just accepts it and moves on to wanting to watch TV or play with his Lego. For us the important hurdle has been overcome.....he understands he will need a wheelchair one day and he's happy to talk about it.

We also recently had another realisation. Everyone knows about Harrys condition our friends, our family, teachers and just about everyone else that came into contact with Harry except the people he probably spends the most time with...... his class mates. We were given a great piece of advice. His class mates will have a greater understanding of Harry's condition and are far more likely to help Harry if they understand what it is like for him. Working with the teacher in Harrys class we are going to go into school and talk to the class. We are keeping it simple and talking about muscles. Imagine wearing a suit of armour for the whole day. Fun at first but that's what it's like for Harry all day, every day. We are going to take some wrist and ankle exercise weights in and let the children put them on and then run around. Again it will give them a feeling of what it is like for Harry. An American family we spoke to have done this every year as their schools are huge. One year their son asked them not to go in. It was the worst year for their son as he was with a new class and they didn't understand his condition. It may not be right for everyone and you certainly need the school on board but we'll see how it goes and keep you posted!

November 2016

It’s been far too long since this blog has been updated so now it’s hard to think back and cover everything…..

Following on from our plans above to talk to Harry's class about his condition we can confirm this is something that has really helped. The school and teachers have been on board with it and again just being open and honest with everyone has really helped. I'm sure Harry has grown much closer to one or two friends simply because they understand a little more about what Harry is going through.

Over the past 18 months there have been some huge moments that stand out. With all our amazing friends support and encouragement we have raised a total of £216K to date under the umbrella of Help4Harry so massive massive thanks to you all for supporting us as you do. Things have been quite emotional in one way or another, as a family we have faced quite a few hurdles. Two of the hardest for us has to be the Translarna Campaign and Harry’s emotions over the last 6 months.

A few months ago Harry became more aware than ever, became very cross, sad and at times upset about his condition and the fact that all his friends were able to do much more than him, it’s hard to find the words to try and comfort him when he says “It’s sad to be me” the first time and probably every time I cried, without letting him see this. How do you find the words to make things ok, I can’t say things get better because more than likely they won’t. We try and remain as positive as we can for him and remind him that the future he is thinking about is a long way off (we hope) and that we must try and enjoy the here and now and have lots of family/friends/fun time. It’s taken a while but I think he has turned a corner and, for now, he seems a little more settled.

With regards to Translarna, I don’t think we have ever dealt with anything as frustrating as this, we have been to parliament several times, Harry delivered his letter personally to Number 10 Downing Street, the whole process has taken over 2 years BUT the main thing is we got there in the end, we had to write to MP’s/papers/radio stations etc., here is a letter we wrote when we heard there would be another delay earlier this year….

“We’ve heard today that NICE will be unable to announce a decision on Translarna until April, despite previous assurances of a decision this month. NHS England have also confirmed it could then take a further 3 months for them to implement the decision made by NICE. I find this absolutely shocking how the Duchenne Community is being treated by NHS England/NICE.

We have noticed recently that Harry is tackling the stairs differently….. this is the start of the decline, it makes me feel sick to my stomach, a feeling of loss of control, spiralling and we can’t do anything to help. I do of course realise that we are one of the lucky ones as Harry is pretty strong for a ‘Duchenne Boy’ but that doesn’t make any of this process any easier to take. This drug is out there within reach and yet again we are made to wait, more than 18 months after we originally thought we would get the drug – how many boys have lost the ability to walk in that 18 months??

This is our Harry, our gorgeous, cheeky, sometimes challenging boy, I want to scream at the people who appear intent on extending this process”

Now we have Translarna the fight must go on as the drug is not suitable for all boys with Duchenne and still we need a cure.

So has Translarna made a difference yet, well unfortunatley for Harry there was another twist literally. Four days before starting the drug Harry fell at his swimming lesson and fractured his leg. A displaced sprial fracture meant he had to have a full leg cast for 6 weeks and is currently in a shorter cast for another 2 weeks. He's coped amazingly. For older Duchenne boys any fracture, particularly one that prevents mobility, is a disaster and often boys are operated on rather than put in a cast. As Harry is young and still very mobile the descision was made to go for a cast. Whilst this has meant an early introduction to a wheelchair he has adapted really well. At first he was frightened. We hadn't clicked that Harry thought using a wheel chair now meant he was now going to have to use it forever. A simple thing but he'd assumed that this was it and didn't realise it was only temporary. Now he's on crutches and hopefully the cast will come off in the next 10 days......