Clark's Story

"After four years of trying to have a baby, in 2015 we found out that we were finally pregnant – with twins no less!

We welcomed Clark and Dudley into the world in March 2016. We noticed at 5 months old that Clark wasn’t opening or using his right hand. Our doctors vaguely mentioned “developmental delay”, but to just “wait and see”. However, I had read that a baby with such an obvious hand preference was a red flag – we knew something wasn’t right and pushed for an MRI.

The MRI scan (at 8 months old) revealed a rare 4cm porencephalic cyst (cavity) in his brain, confirming a diagnosis of hemiplegia cerebral palsy.

What we now know is that he suffered a grade IV brain haemorrhage (one of the most severe types of stroke) around the time of birth; apparently just “bad luck”. We were again told to go home and wait and see. We were told to stop asking questions about why it happened and possible treatments; that nothing would change things. We were told to be thankful that he wasn’t in a vegetative state considering the extent of his brain injury. We were told he would “probably” walk but that they couldn’t say how well. We were told his right hand would be nothing more than a “helper” hand at best. It was an emotional time.

What we weren’t told about was all the therapies and support groups that are out there. We refused to just “wait and see”- and we believe that early intervention can, and already has, helped Clark. We were particularly excited about Constraint-Induced Movement Therapy (CIMT) and felt it was Clark’s best shot at gaining any level of function of his right side. It’s relatively new and not available on the NHS. There is a centre in the UK, but it would cost £9k. We searched further afield and learnt about a clinical trial that is currently happening in Virginia, USA. The physios there are experts and include people who have worked on it since the foundation of the therapy. The idea is to constrain the unaffected side to encourage use of the weak side. It’s already proven in adult stroke patients, but this was the first study on infants – the results so far show great things, given the ‘neuroplasticity’ of young brains and the ability to rewire. He also attends a wonderful conductive education charity called Small Steps, every week.

The trial is free as it is for medical research. We crowdfunded just before the twins’ first birthday in March 2016 to raise money for the flights. We got accepted onto the trial (the only people from the UK!), and we flew out in September. We spent 5 weeks learning from the truly wonderful people at Virginia Tech Carilion in neurorehabilitation research.

Our therapist, Dory, came to our room every morning at 8am and worked daily with Clark and solidly for three hours at a time. We achieved his first steps; his first attempt at pincer grasp and isolating his pointer finger, and so many other firsts. He increased his ability to reach, to turn his hand, to assist with dressing, and generally increased awareness and ability of his right side to the point where it blew our expectations out of the water! Before we went, he would rarely attempt to use his hand and only when we constantly prompted him to. Now we find him not only spontaneously trying to pick up toys with it, but succeeding.

When we look back to a year ago, it was hard to get past all the “whys” and recognise that strength was needed instead of tears. It may have felt like we were falling apart, but it has made us very tight as a family, and that includes extended family and friends. We’ve learnt so much. You never know what other people are going through I would obsessively look at other babies’ hands; to see if they looked the same as Clark’s; to see if they were going through what we were going through. But I realised they might have been going through something completely different and just as difficult for them. Also, I’ve learnt that you can ask for help. Your real friends will surprise you with their understanding, generosity, and love.

Looking at how he’s progressing, his abilities do not reflect what we can see on the images of his brain. He is working so hard and he amazes us every day and it’s all about hard work and neuroplasticity whilst he’s an infant. The highs outweigh the lows nowadays. We have rough days sure. Sometimes Clark gets so frustrated with himself it’s upsetting to see, and we worry about his future, but then he’ll do something amazing to remind us he’ll be okay. I can say with confidence that “use right too” is the most-used phrase in our house! Of course, he also has his twin brother Dudley, who is simply an amazing brother. We know he’ll be the best support for Clark in the future, and keep encouraging him to use his right side.

It’s already beginning to look a lot like Christmas for us, with walking starting to become Clark’s preferred method of getting around. We don’t know what the future holds for Clark, but we do know that there are so many possibilities! There are so many exciting therapies to investigate further and so much room for change.

So, we will be doing more intensive therapy with Clark whist he’s young. We are aiming to go back to America in May. We set up “ClarkFest” last month, which was a charity gig and raffle and raised an incredible amount of money. ”

Bradley & Jenny Murray- Proud parents to Clark and Dudley

Debby's Story

I was 37 years old when I had my stroke. It was totally unexpected. On Monday 20th May 2013 I had walked my son to school and when I got home I fell asleep. We’d had a busy weekend. I took my son on Sunday to bowling along with his friends because it was his 6th birthday. My daughter was getting ready for her GCSEs and went to school on the Monday for exams.

I didn’t go to bed on the Sunday night because I was doing my coursework for university (Social Work degree), which had to be in on the Friday. When I woke up I tried to go to the toilet, but I could not get there. I tried to call my oldest son who was downstairs, but he didn’t hear me. I crawled onto the landing and shouted him. Finally, he saw me I thought I made sense, but I didn’t when I shouted him. He phoned for an ambulance and went to my neighbours. I went unconscious then I remember my next door neighbour being there. I also remember my dad being there. It was totally weird!!! I kept on going in and out of unconsciousness.

My mum was waiting for the ambulance to get to the hospital. I don’t know what happened then. I was in hospital for 7 weeks and the hospital didn’t want me to go yet but I was bored. I couldn’t speak, write or read. I was in a wheelchair. My right hand was not working. It still doesn’t. I have learned to walk again. My reading is OK and I have learned to write with my other hand.

I passed my driving test again and got an automatic car. Soon after I started the attending the local Stroke club. I am so grateful that I have a great family. My husband said that he was scared when I came home because I couldn’t do anything. Now I go to the gym, I go to acupuncture, oxygen with my parents and I used to go to a speech woman and a physio. This year for Christmas we are going to a hotel for our dinner which is paid for by our kids. I would tell anyone who is in this predicament not to give up!! Yes, I have days that I don’t want to get up, but I do. In the future I want to get back to Hull University to do Social Work degree (I think I want to work helping other stroke survivors) but I’ll wait and see and take it one day at a time.”

Ryley's Story

"Ryley was a fit and healthy 14-year-old lad. He loved sport and ran competitively for a local athletics club, played football for a local team and was in the school athletics, football, and rugby teams. He was also a very clever lad attending our local grammar school in the top sets hoping to study law at university after his A levels.

During the winter of 2015 Ryley trained hard in hope to get into the county team for sprinting and started the season well in May 2016, winning the county championships at 100m with a personal best and was looking forward to the track season ahead.

Unfortunately the following week our lives changed. It was a Friday evening Ryley returned home from school got changed and raced off to our local village park to play football with his friends. Later that evening Ryley took a shower and it was then he shouted out he had a headache. Within minutes he collapsed was unconscious and vomiting violently. The rest is very much a blur to us now.

He was rushed to our local hospital where we were told he had a massive bleed on his brain and needed emergency surgery. We could not understand why or how. We were told he needed to be transferred to Addenbrookes although they said he may not make the journey, but they wanted to give him that chance. That journey was the longest of my life, being in the front of the ambulance not knowing if my son was still alive in the back.
On arrival, Ryley was taken away and I was not permitted to follow. I remember the doctor that had travelled with him sitting beside me crying and I thought if she’s crying too then there’s not much hope. Scans revealed a massive cerebral haemorrhage with an underlying AVM and left septal haematoma. He had neuro surgery to evacuate the haematoma and a craniotomy. Ryley was put into an induced coma to allow his brain to recover. After a week or so they gradually reduced his medication, but he did not wake up and it was then a tracheostomy was fitted. You hear many stories of people awaking from comas and talking, smiling responding to sounds but this was not the case with Ryley. It was a very gradual stage of awareness I liken it to having a new born.

He spent 4 weeks in PICU before moving to a ward, he was still unresponsive I had no idea if my gorgeous boy was still in there. In July Ryley had his tracheostomy removed and a gastrostomy inserted. One evening in July we had a massive breakthrough I saw him raise his eyebrows I quickly homed in on this and explained to him he could use this communicate raise up for yes scowl for no. He picked up on this quickly and after asking him questions I discovered he was in there he knew who he was, where he lived what school he attended, and the list goes on. I cannot believe the sense of relief I felt nothing else mattered from then on.

The neurologist explained to us that scans showed permanent damage to his brain due to a prolonged period of oxygen starvation. This was in the area of the brain that affected his movement and mobility, so it was likely he would be a long-term wheelchair user and we would have to think about making adaptations to our house. I could cope with this although my response was that we’d just have to train for the Paralympics now.

We spent 3 months in hospital, before moving to a lovely ‘home from home’ nurse led care home for a further three months, whilst waiting for a place at The Children’s Trust in Surrey for intensive rehabilitation. It was here Ryley began to use a spell board to communicate and began to learn how to eat solids again. His voice also improved slightly, and he could say the odd word. Physios, speech therapists and OTs visited daily and Ryley worked so hard. It also became evident that he had not lost his wicked sense of humour!

In October 2016 we returned to Addenbrookes for surgery to remove the AVM and fit a titanium plate to his skull. Ryley was quite excited to become ‘Ironman’. In November we moved down to The Children’s Trust in Tadworth for a 4-month intense rehab programme. Again, Ryley worked hard and although he was plagued with chronic fatigue, much of it brought on by the medications being taken to reduce his severe upper body dystonia, it was here that he was given an electronic communication system. Once he learnt how to use this there was no stopping him! He often had the staff in fits of laughter with his jokes and ‘banter’. Everyone who worked with embraced this and were astonished by his acceptance of his injury.

Finally, in March 2017 after 10 months away we returned home. He was so happy to be home and it has been since his return he has made the biggest progress. I don’t want to dwell on any negatives here and yes there have been many battles and still many ongoing ( education/house adaptations/ equipment etc) but I want people to read this story and draw strength and hope from Ryley’s journey.

We have been blessed by our friends and local community who supported Ryley by fundraising to enable him to continue with specialist neuro Physio, which was not funded by our Local Authority. We travel an hour each way every week to take him and he also attends a local gym weekly to build his core strength. He hopes to achieve his goal of walking unaided. He has joined a Boccia club and enjoys the social side of meeting others with disabilities. In July his gastrostomy was removed and he came off all medication this has helped immensely to reduce his chronic fatigue.

Ryley now has a powered wheelchair, which has given him a bit of independence back. He continues to use an electronic communication system although mainly for when he tires and is plagued by the frustrating dystonia, but he never complains or moans if he feels sad then we find something to laugh about.

He has lost so much but we concentrate on what he CAN do not what he can’t. We focus on the positives as Ryley still has a long way to go and so much more to give. Ryley’s goal for next year is to give running competitively in races a try, so he can get back on the track and run like the wind again.

Christmas this year is about being home around the ones we love most and eating lots of yummy food now that he can.”

Mel- Ryley’s Mum

Rebecca's Story

“My name is Rebecca Merritt and I am 34 years old. On the 13th June 2017 I suffered a stroke. I had been to work as normal and was at home for a quick shower and thinking about cutting the grass and making tea.

My mum called round and as she was leaving (which i now believe was a complete twist of fate) she turned and asked me one more thing. I went to answer but couldn’t speak! It felt like something had locked in my face and jaw. I lost all thought and within seconds I had collapsed as my right-side leg and arm had gone weak.

I remember being on the floor, still trying to speak. When I got up onto a chair I knew something wasn’t right. I needed to look in a mirror as my face didn’t feel right. My face on the right side had drooped. I am a mother to two children who were due home from school. I told them I had been a bit dizzy and went with my mum to my doctor’s surgery. The doctor saw me straight away and insisted immediately on an ambulance to hospital. My blood pressure was hypertensive (189/135). I don’t remember too much from my time in hospital, but I had a CT scan which didn’t show anything. Then I had an MRI scan which showed part of my brain left side was permanently damaged. The consultant came to tell me which left me completely in shock as I was told by the ambulance paramedics that it was “probably a bit of anxiety at your age”, and told by staff in hospital that it may have been a TIA (mini stroke).

I could go home with medication to take for the rest of my life & heart investigation tests were booked. I went on to be admitted twice more to hospital when my blood pressure was too high but also dropping dangerously low. Again, as I was in severe pain (suspected blood clot on my lung) due to spasticity, a condition after having a stroke where your muscles contract and don’t stop. I had nearly three months off work and now nearly six months on I am back and on full duties. I underwent all heart tests and nothing was found apart from a very small hole in my heart. My consultant did not think this caused my stroke. He said it was caused by the combined oral contraceptive pill. I had taken this medication for just one week prior to my stroke and unaware to me it had thickened my blood that much that it had caused a clot which had travelled to my brain.

I really struggled with letting anybody see me when I’d had the stroke because I almost felt like a fraud. I was walking about, talking, eating and as far as anybody could see I was fine. Doctors asked me over and over if I had been having headaches but I hadn’t.

The frustrating thing I’ve learnt is about having a stroke is that it isn’t like a broken arm that you can see. There isn’t a bandage to see on the part of your brain that has died and if, like me, you make an almost full recovery, people might probably never know. I will be honest in my story and say I sat in the hospital and Googled “a stroke”. My consultant told me that since I didn’t smoke or wasn’t overweight my body had being able to massively compensate for what the right side went through. I was left weak and I still attend physio now to build my strength up as my job is physical. My balance and speech are almost back to normal.

It took me three weeks from coming out of hospital to be able to comfortably watch the TV or listen to the radio, as I felt like it was talking at me and was too much to process. All this put massive stress on my relationships with family and friends, but I am a very determined & strong woman, so if I could get up and do, then that’s what I did. I could have easily on some days just sat and cried and felt sorry for myself, but I felt so lucky to be alive that I could not be beaten. I live in fear everyday of having another stroke and not being so lucky.

I hope my story can raise awareness that every stroke and each person’s recovery can be different. Warning signs are not always there. You will never be the same person, as you were before your stroke, but if you have any strength and fight in you, I believe you must use that to try move forward and be grateful for the life you still have. I would like in the future to also raise awareness of the dangers in taking the combined pill and I am now on the mini-pill which does not have the same risks.”

John's Story

"I had a stroke at age 47, 3 years ago. Having worked in Architectural and Surveying practice from the age of 20, I had been self-employed for around 18 years running my own Architecture and Surveying consultancy dealing with
multi-million-pound projects, as well as being Managing Director of a Property Company for over 10 years. Coming from a Yorkshire working-class background, I had taken my opportunities and life had been good to me. I’d been happily married to my wife Jools for 24 years and our two children, Grace and Alistair, were growing up and finding their own feet in life. With a lot of good fortune and the love and support of my family and friends, I could not have asked for any more from life.

I woke at about 6am on the morning of 12th October 2014, got out of bed and fell on the floor. I have a vague recollection of trying to pull myself up on the furniture and my wife, Jools, calling an ambulance as she thought that I had suffered a stroke. To cut a long story short, it turned out that she was right; and that call saved my life! Within half an hour, I was in casualty at York Hospital where a team of specialists were awaiting my arrival. If Jools had waited 30 minutes, it is a stark fact that I would probably have been dead.

I had suffered from a thrombotic stroke caused by a clot forming in my carotid artery, causing severe damage to the right side of my brain, and leaving me completely paralysed on my left side, drooling, and having difficulty speaking, and somewhat ‘dazed and confused’. Following a few complications, and not very pleasant 40 mile ‘blue light’ ambulance ride to and from a neurosurgical unit in Hull, I spent the following 6 weeks in a stroke rehab ward back ‘home’ in York.

After returning home I was put in the care of a great community stroke team where I received a home visit from a physio or OT every other day for about 10 weeks. I thought that after 6 months I would have largely recovered. However, 3 years down the line, I now realise that it is a very long and hard road. I have probably tried every therapy you can think of and found that a lot of hard physio work is necessary, but patience and time are probably the greatest healers.

Having no driving license for three years I now cycle an adapted trike around York, to the shops, barbers, pub, doctor etc. and sometimes on trips further afield. Two and a half years after the stroke I was able to walk a mile, with excruciating pain and determination, and my walking continues to improve. Sadly, there is still no movement in my left hand and little movement in my arm, but I am working on it!

Whilst I was ‘incapacitated’, a small number of people took advantage of my circumstances and my consultancy went under. Thankfully, the cognitive effects of the stroke were not too bad. My speech recovered quickly and 18 months later I was able to adapt the way I work to start a new business. It is going well and it would be better but for my continuing fatigue.

What is still frustrating is that the doctors have been able to give me no reason for my stroke, other than ‘A bit of bad luck’. I had low cholesterol, normal blood pressure and was otherwise fit and healthy, so why me?

In the early-days, I became very depressed and angry, even contemplating and planning suicide at my lowest point. However, I am now looking at my life positively, planning and looking forward to new and exciting adventures to come.

Stroke has obviously slowed me down a bit, but I have not allowed it to change my life significantly. I have simply adapted to my new circumstances. I do not drive (yet), I work differently, and am enjoying living life in the ‘slow lane’. I now appreciate how lucky I have been in the past, and the importance of my family and friends.

This summer, despite not being able to walk to the end of my street, I achieved one of my lifetime ambitions, cycling from York to Lucca in Italy( 1350 miles). It is something I had wanted to do for many years and if I hadn’t had a stroke I would probably never have got round to it.

I had never heard of Different Strokes until I met a fellow ‘survivor’ Eddie Pleban on an outdoor activity week at Calvert Trust in Kielder. Eddie and I both have a passion for the great outdoors (and wine) and we hit it off straight away. Eddie told me about his ‘DS’ group in Norwich, so I hoped to find one in York. Unfortunately, the York group had been disbanded. So, I set about getting one going! Over a year the group has grown steadily with around 20 of us meeting weekly for a brew, chat, and exercise, but more importantly, a few laughs. Setting up the group and helping others has been cathartic and has been a massive part of my recovery process, both mentally and physically. Having to get off my backside and get there every week and seeing the progress in others is more rewarding than I could ever have imagined.

The best thing about having a stroke in your 40s is that people tell you that you are ‘young’! I laughed at first, but have come to realise that there is still a lot of life left to live so I have accepted my limitations and intend to live it to the full.

For what it is worth and with the benefit of hindsight, here are my top ten tips:

1. Talk to those around you and don’t bottle up your emotions.

2. It is embarrassing to ask for psychological help, but worse if you don’t

3. Listen to the professionals. You may think you know better, but they have the training

4. Be positive and those around you will respond – you will get much more out of any therapy

5. You survived this – you can survive anything and get over any setback.

6. Your life will not be exactly the same, but you and those around you can adapt

7. Drink lots of water

8. Work hard, and work ‘smart’

9. Take lots of rest breaks and don’t be afraid to take time out when you need it

10. Be patient. We will all get there!

(If any of my therapists ever get to read this, they will have a good laugh at number 3!)"

Isabel Story

“As I write this my daughter Isabel will be turning 7 tomorrow. I can only describe her today as like a bottle of pop – just ready to pop (with the excitement of it all). In three weeks’ time, it’ll the her sixth “stroke anniversary” as she was just a year and three weeks old when it happened. My husband and I didn’t appreciate children had strokes and thought it was something that just happened to “old” people or to the middle aged if you were unlucky! How naïve we were!

Isabel had been suffering with a virus for 8 days prior to her stroke and we’d seen a doctor most days – on one of those I went twice in the same day as she seemed so very poorly They just kept telling me that it was viral and to give it time for her to recover. On the day of her stroke we’d had her at the doctors at 4.30pm and I asked whether it was time to admit her to hospital, as I couldn’t get her temperature down under 100 degrees (with Calpol) but I was fobbed off with antibiotics and a promise that a nurse would call later.

At just after 8pm that night I heard her cry out and said to my husband that I didn’t like the sound of that and went to investigate but found her asleep (or was she unconscious?) so left her. When she woke in the night I offered her a bottle of milk and it came out of the left side of her mouth. The doctor had said she had a sore throat so just thought it must be really sore and she couldn’t swallow. The next morning a nurse called, and my husband told her that he didn’t think Isabel’s eyes were focussing properly. She got her car keys out and tried to get Isabel to follow the keys – she told us that she may have problems focussing if she was having a temperature spike. She left us with a promise to call later in the day and Isabel grizzled most of the day and we noticed her not sucking her thumb which she’d done up until the day before. My husband noticed that her left side wasn’t “right” and brought this to the attention of the nurse when she called later. She then gave her the once over and got us an appointment with a GP.

The GP thought she needed to be admitted to hospital so wrote a letter and we had to wait for two hours to be seen on our local children’s ward. In that two hours I could really see her going downhill rapidly and was somewhat frantic, to put it mildly! Eventually they found us a bed and once the registrar had seen her, she got the Consultant and things finally started to happen. They did a CAT scan which confirmed a stroke and she was transferred from Portsmouth to the Paediatric Intensive Care Unit at Southampton General hospital, who discovered that the left side of her brain was also about to have a stroke. They managed to stop this happening and saved her life. However, having lost 70% of the right-hand side of the brain, she has been left with life-long disabilities.

We spent six weeks in Southampton having intense rehabilitation and then we came home. It was like coming home with a new born baby again. She couldn’t sit up! we weren’t really sure how much she could see, and she screamed every time I left the room. She didn’t sleep much either!

My husband and I struggled to cope – we had visited PICU before having had a daughter born with CHD five years earlier. She’d passed away unexpectedly at 5 weeks old and ten days after bringing her home. I was petrified the same thing would happen again with Isabel. Re-visiting PICU brought back too many memories and we both suffered with depression over the next year.

Although 2012 was a very tough year for all of us as a family, and particularly hard on my five-year son who very much had to take second place with Isabel’s care and constant stream of appointments, but we did get through it and I’m very pleased to say that my darkest fears weren’t realised. As days turned into months and months into the year we got back into more of a routine, and we got to know the team of health professionals who would be supporting us. By the end of the year Isabel was walking! A major milestone was achieved on that one.

It’s fair to say that her recovery has been much better than expected but she has been left with left-sided Hemiplegia and is partially sighted. She’s never really regained the use in her left hand although does use the arm up to the elbow – essential for the carrying of dollies!!

She is now in a mainstream school with support in place and doing well academically. We could have been writing a very different story here and I count my blessings that she is still with us and doing so well.

If you met Isabel, you wouldn’t realise in many respects that this girl has lost a third of the brain. She is very feisty and determined and it is these qualities that have brought her to where she is today. She tries her very best to be independent and do things for herself. I just hope that she retains her self-confidence, self-belief, and that despite the obstacles she has to overcome that she can and will do it. She’s just joined Brownies, is learning to swim and loves to cycle on her trike.

If your child has had a stroke recently and you’re reading this I can’t promise that dark times don’t lie ahead because it is such a stressful, awful time to go through and you will get fed up of the appointments and the having to fight for adequate provision for your child. But their achievements when they must overcome adversity will be even more special. Join the parent support groups that are available and as parents we need to support each other and sometimes you just need to have a rant!