The following presentation was written and delivered by Danny Sweatman at a Meningitis Research Foundation symposium earlier this year, outlining his story in remembrance of Joe and Ryan.
Good morning all, I’m Danny Sweatman and I’m here today to tell you my story. A story with much sadness but with a real dash of happiness too. I’m just going to keep these two up for a little while as they are one of the main reasons I’m still smiling and able to stand here today. They are also a good reminder to ensure I keep composed as much as possible throughout my story, as Shirley can testify, I’m an emotional wreck at the best of times. Please forgive me if I take an extra deep breath, turn away or run to the bar for a whiskey. Before I left yesterday afternoon Maxwell said – ‘No crying Daddy’ so I’ll do my best today.
An author once said; “Sometimes we need someone to simply be there. Not to say anything or fix anything, but to let us know they’re on our side.” And on behalf of my family and I, I would like to thank Shirley, Ian and the rest of the MRF team for all their support over the years and for inviting me to speak today. I also want to thank everyone sitting in here who plays any part in the drive to one day eradicate all forms of meningitis. I hope by having the opportunity to speak to you all, I can continue to highlight the reasons why the work of MRF, scientists, doctors, nurses and all health professionals is so crucial and really does mean the world to all families that have ever been affected.
Don’t be deceived by my receding hairline and bags under my eyes, I’m 30 years old and live in Norwich with my beautiful wife Suse and my two children, Maxwell who turned 2 in March and Matilda, who is 5 months old. Hence the bags under my eyes comment!
I am in the 10th year of my teaching career and I’m currently Head of Nurture Provision at Aylsham High School in North Norfolk, teaching a vulnerable group of students in year 7 and 8. The group primarily addresses the challenge of transition from often very small primary schools to a large secondary school environment. It also helps us ensure that students are given the academic, social and emotional support they need at this hugely significant transition point. It’s certainly a job I love going to everyday. I live for my family, friends and for making a difference in this world, even if it’s a small difference and I feel honoured to be given that chance to impact children’s lives through education and also in my role as a Meningitis Ambassador.
I wish the sole reason I was asked to stand up here today was to simply remind you all of the reasons for continuing to do what you all do. To try and stop the devastation meningitis causes. To stop babies, children, adolescents and young adults from dying or from having life changing and often irreversible effects. To stop families being torn apart. My reasons are of course all these but we are that family that meningitis tore apart. It was never going to happen to us. But it did. Twice.
In 1991, I lost my baby brother Joe to pneumococcal meningitis. I was only 6 at the time but I remember it vividly. On January 3rd, my Mum gave birth to twins – Holly and Joe. I already had my younger sister Carly – who was 4 at the time, to annoy and I remember having that big brother excitement when Dad came home to tell us the news. Although Holly came home for cuddles, Joe remained in the special care baby unit due to a problem with his esophagus. We visited regularly and he eventually came home after a few weeks and then just like that, Joe was just taken from us. I can’t remember anything else as a 6 year old apart from that night. I remember Mum screaming. I remember an ambulance arriving and Joe being taken away. I remember going to the hospital and sitting in a room with Mum and Dad with a horrendous sense of anger and sadness in the air. I never saw Joe again. He was 7 weeks old when he died in my mum’s arms and this was only two hours after Mum had noticed something was wrong. She’d heard Joe cry quietly; he was very sleepy and lethargic. He’d felt lifeless and when she picked him up, he didn’t want to be touched. Mum later told me that he also took a huge deep breath in just before she had called for an ambulance. Mum and Dad only knew it was pneumococcal meningitis after Joe had died. Everything just happened so quickly. Mum and Dad had to carry on for us. I’m not sure what would have happened if we weren’t dependent on them. It scares me to think about it. It has always been difficult to know that every milestone Holly has reached is one Joe should have reached with her. I know Holly still feels a huge part of her is missing, as we all do. Joe was just a baby – his whole life was taken from him. It just seems so unfair. Although my Mum and Dad continued to be incredible parents, I knew life would never be the same again. I even felt it then at 6 years old. It left a feeling of hurt beyond repair that rippled through our whole family, friends and people within the community. I could see the pain every single day. I cried when Maxwell turned 7 weeks old. I just couldn’t imagine losing him like my Mum and Dad did with Joe.
For meningitis to take little Joe was devastating and for it to then strike us again 21 years later was unimaginable.
My brother Ryan came into the world on October 8th 1992. He was such a fantastic baby, very quiet and always sleeping – much like his teenage years. As the baby of the family, he was pulled around, told what to do and was the one we always blamed when something went wrong. As he grew up, he watched us all move on. I went to University in Canterbury to fulfill my teaching dream, Carly opened up her own dance school and moved out to live with her now husband Tom and Holly found love and had her own place too. I think he loved every minute of it. Being the baby he had Mum dote on him every day and could never do anything wrong in her eyes. In fact he never did anything wrong anyway. He was the most loving and caring person I had ever met and that still rings true to this day. He always thought of others before himself and he was always there to give you a hug before you could ask for one. Although we would obviously do a kind of manly, tap hug thing.
Ryan had a real passion for football – playing it, watching it and analysing it. For our sins, we had a Norwich City season ticket. Although the football wasn’t great every week we went with most of our family who also had tickets, so it was more of a family social event.
Ryan did well at school and went onto college before beginning university at Sheffield Hallam where he studied Sports Development and Coaching. I say studied very loosely as I visited him twice during the first term and if Jager bombs count as study then he was doing very well. He had made his own little family at halls – lads who loved football, music, xbox and eating subway rolls.
He wasn’t just my little brother but he was my best mate too. He was my best man at our wedding. He did the most amazing best man speech and told everyone my worst secrets – which I certainly won’t be sharing with you all today. I always promised him that I would get him back one day, but he really was an angel and didn’t ever seem to put a foot wrong in life. Most brothers that I know argue and fight. We didn’t. Even though he was my younger brother I looked up to him. Not just because he was taller than me but his humour, charm and intelligence was second to none. He stole all of the ‘good looking’ genes and I also envied his fashion sense – although I would never tell him that. He had a real relaxed attitude to life, even in stressful situations and beat me at every single game or sport we ever played. I felt truly lucky that he was my brother and I was so very, very proud of him.
On January 6th 2012 my life fell apart. I lost my 19-year-old brother Ryan in his sleep to Meningococcal Septicaemia. It’s simply impossible to try and describe my feelings that day. I’m still not entirely sure how your body and brain copes with news like that but I wouldn’t wish it on anyone. There cannot be any feeling in the world close to losing someone you love and then being immersed in such shock, upset, anger and unbearable pain every second. I’m still not entirely sure it’s fully sunk in and time doesn’t seem to have moved on. It has, but not a single day goes by when I don’t think about that day. It’s a day I never want to remember but the heartache is so great it just takes over your thoughts.
I was at school when I heard. My mum’s friend Martin called. He could hardly talk and I could hear my mum sobbing in the background. I remember asking him what was wrong numerous times and he couldn’t say. Finally he did. I don’t really recall getting to my mum’s. A colleague drove me. The police were there and mum was inconsolable on the floor in Ryan’s room. Dad was at the Norfolk coast and had collapsed on hearing the news. I saw him briefly before he drove to Sheffield. He just wanted to be with Ryan. Our world had just imploded on itself.
Mum had been preparing at home for Holly’s 21st birthday – what should have been Joe’s birthday too. Ryan had been home for Christmas and headed back up to Sheffield for lectures before he’d planned to return back to Norwich for Holly’s birthday celebrations. I saw him lots over the Christmas period. He’d had a cough and cold the whole time but nothing that any of the university students didn’t come back with after the first term of partying. He was enjoying every second of it and couldn’t wait to head back again.
The police told Mum that he’d gone to bed and didn’t wake up. His friends found him in the morning and they had mentioned a rash on his body. Mum knew immediately that it was meningitis. Ryan knew the symptoms as well following our relentless awareness campaign after Joe died but it had all happened so quickly.
The next few weeks were a blur. I slept in mum’s living room. In fact we all did. We supported one another and faced the heartache head on. Mum and Dad had divorced many years beforehand and only being able to be with one of them was really tough. I wanted to help. I wanted to stop the pain but I couldn’t. Meningitis had struck our family again.
Ryan’s friends at university were also greatly affected by what had happened. They were with him the night before and saw those flu like symptoms only to find him in his bed the following morning. It’s simply not fair. Ryan was a typical student, yet he was fit, healthy and knew the symptoms of meningitis and it still took him.
Everyday has been a struggle without Ryan and I worry about my mum and dad the most. My mum is a true rock to us all. An inspiration not only to our family but to numerous families across the world who have also lost children to Meningitis. She continues to communicate and support them even though I know how much pain she is going through herself. It’s a true reflection of what an amazing lady she is. She’s thrown herself into being a Nanny and mine and Carly’s two children think the absolute world of her. The same can also be said of their Grandad. Dad though struggles to put on a brave face and it’s heartbreaking to see how losing Ryan has torn our lives apart.
Shortly after Ryan died, Carly, Holly and I went to Addenbrooks hospital in Cambridge to investigate whether there was any genetic predisposition to contracting meningitis but results came back with no link found. I’m unsure whether this is because research had not been developed in this area or scientifically there is truly no link. This is something I remain keen to pursue.
As a family what we really wanted to do was to shut the door on the world. The world which had already caused us more pain than imaginable. What I didn’t want to do though was just stop. Stopping was too hard because then you think and thinking was upsetting. Ryan was aware of the symptoms but that still didn’t save him. We wanted a vaccine. After speaking to Shirley one evening it inspired me to do something about it. One night and only weeks after losing Ryan we all sat around my kitchen table and we starting tweeting, facebooking and doing everything we could to ensure Ryan would never, ever be forgotten. We wanted the world to know that we will not be beaten by meningitis and selfishly, it would also give us something to focus on. Something that could prevent other families going through what we had. We set up a rememberryan hashtag and a justgiving page for the MRF and within 3 weeks we had raised nearly £10,000. Everyone was shocked by our story. Shocked that Ryan could just be taken so suddenly. By Ryan’s birthday in October we were up to £30,000 through donations from family, friends, colleagues, local businesses and the general public. Alongside this, we were able to raise awareness of Meningitis. We delivered symptom cards to whoever wanted them. We knew that if we could save one life through all of our efforts, then it would be more than worthwhile. Ryan wouldn’t have died in vain. In May 2014, an ex colleague of mine noticed the symptoms one evening whilst sitting with her little girl Sofia. She had contracted meningitis and by her Mum acting so quickly, she saved her life. 2 doctors wanted to send her home but she remained persistent. Although we can never bring Ryan back, stories like this continue to motivate us.
We then began to immerse ourselves in fundraising events. We had no target for the fund. We were motivated by the opportunity to save lives. One of our most high profile events was held at the end of June 2012, when over 500 people turned out to support a memorial football match at Carrow Road – a place which Ryan loved. The game involved ex Norwich City players Darren Huckerby and Paul McVeigh and featured family playing against Ryan’s friends from both Norwich and Sheffield. The match raised £5,000 and over 200 staff and pupils from Aylsham High School wore ‘Remember Ryan’ t-shirts. A day I’ll never forget.
I also ran the London Marathon – never again! Following an incredible awareness week at Aylsham High School. Supported by my colleagues and students, we bag-packed at our local tescos, arm-wrestled, played volleyball, circuit trained, sold cakes, photos and even created a pop-up shop in town. At the end of the week we had a Valentine’s Ball for colleagues, parents and the local community which included a raffle, auction, a band and lots and lots of drinking. The fundraising that led up to the London Marathon was phenomenal. We raised nearly £15,000 and most importantly over 1000 students were now more aware of the signs and symptoms of meningitis. They gave up numerous hours organising and planning the week and worked tirelessly in Ryan’s name. I couldn’t have been more prouder.
Since 2012, there have been many other events to support Ryan’s fund, some were not always enjoyable to watch.
My sister held a dance show attended by over 1000 people, family and friends took part in the Three Peaks challenge, marathons, Tough Mudders, climbing Ben Nevis, crazy long bike rides, swimming events, cake sales, coffee mornings, triathlons the list goes on. Many shops and businesses in Norfolk continue to have a donation pot at their tills and unfortunately we have to eat cake every Friday at Aylsham High to continue to raise funds. 3 years ago we also made 2000 #rememberryan wristbands – we sold them all with 4 months. We have currently raised in excess of £85,000 and hoping to break £100,000 next year with our second awareness week and 3rd Meningitis ball at Aylsham High.
The support has been overwhelming and we thought we’d achieved what we had set out to do in March 2014, when the JCVI’s recommendation to the government that a men b vaccine, which would save lives and avert disabilities from meningitis and septicaemia, should be introduced into the UK’s childhood immunisation schedule. Our brief smiles were quickly wiped out by three words. Not cost effective. I don’t think I need to stand here today and tell you my thoughts and feelings towards those three words after losing Joe and Ryan. What it did do though was to make our drive to support the MRF team even stronger. There was a vaccine available that would save lives and prevent the pain that we as a family suffer every day and only those that could afford it could have it? We began campaigning again, this time with a new focus. I went on the bbc, sky news and simply anyone who would listen to me. During that year, as a family we spent over a £1000 getting Maxwell, my nephew Harrison and other family members children vaccinated privately. I worried about them everyday. On social media throughout that year, I remember seeing so many poor families torn apart by meningitis and each day that went by without a decision on MenB, more and more families suffered. We began the #WheresOurVaccine campaign following the year anniversary of the decision and my students wrote to as people in power as they could. I knew they were passionate as they simply hated writing yet were keen to support it.
I then received news from Becky at MRF on 26th March saying that there was a possibility it may be announced over the weekend. I didn’t sleep much. Then it broke on the news on Sunday night/early Monday morning. Not long before 2:08am to be precise because I text everyone. The decision was all too late for Ryan. But actually this was for Ryan. Every penny we had raised to support the MRF was because of Ryan. And this what we had wanted for 3 years.
This is Matilda and my niece Phoebe who have recently had their second Men B vaccine. This makes me proud. Proud of every single person who has supported my family and I and got us through over the last few years.
We won’t stop though…a children’s catch up programme, a focus on teenage carriers and just a good bloody excuse to climb Kilimanjaro. We will continue to do what we can to support the incredible work the MRF team do all in Joe and Ryan’s name.
Featured image credit: Danny Sweatman