Children's Charity for the Freeman Hospital

Here is the speech I gave at the official opening of the play facility, which Seb opened on 30th August 2014.

Good afternoon and welcome to you all.

Nadine, Seb and I are absolutely blown away by the amount of you who have taken time out of your busy lives to celebrate this very special day with us.

The fact that we asked you to share this event with us, makes you part of a select group of people. Because it is down to everyone here that this place exists. But before I do the formal stuff, I wonder if you might allow me the opportunity to share a few thoughts with you?

From where we stand I can see the room where Dr Richard Kirk and Paddy Walsh informed us that our beautiful son (not even 24 hours old) had a congenital heart defect called Tetralogy of Fallot. Over there is the room we sat in waiting for the call to take Seb up to theatre and just across the other side of that building is the room that we kissed Seb on the head as he was taken into theatre. We didn’t know whether it would be the last time we would see him alive and sobbed as we felt our worst nightmare coming true! Recalling those moments I am reminded of our emotions (as if it were only yesterday); fear, loneliness and utter helplessness. Thanks to Asif, Richard, Paddy, Lesley and everyone else who cared for Seb; today is not just a day to celebrate an amazing playroom, but more importantly this world class facility with its skilled and dedicated team; because without them, Seb might not be here today!

Fast forward to any one of our many crazy challenges and the emotions shared before, couldn’t be more different. You could pick any of our challenges or fundraising events and words like camaraderie, teamwork, support and one hell of a lot of fun come to mind. Now don’t get me wrong; I’d be lying if I said every single moment of our fundraising has been fun. The nature of what we do requires a little suffering and pain; but in dark times, when you’re not sure where you will find the strength to continue you remember children like Seb, Rachel and Jack– all with us here today, because of this place.

So where did the fundraising actually start? We were sitting in intensive care watching over Seb. Minutes become hours, hours become days and your mind takes you to some very strange places. Yet in one of our lighter moments as Seb’s health started to improve we looked at each other, both thinking the same thing; we have to thank these guys for saving Seb. Our initial target was £120,000; an amount we thought would take us at least 5 years to achieve; an insane amount of money, but by putting this out there we thought people would either laugh thinking we were a little unhinged, or they’d stand up and support us. Thank the Lord the latter happened and in the September of that same year we started our first baby steps of fundraising by completing the Great North Run.

Over the following 5 years we have swum, cycled, run, hosted charity balls and one idiot even skied in a Mankini! On top of this there has been countless cake sales, Baby and Toddler Nearly New Sales, Birthday donations and more acts of generosity than I could possibly list right now. We’ve now raised £370,000, over three times our initial target and it’s because of all of you that we’ve been able to achieve this.
So why a Playroom?

Part of the reason we chose to focus on this was because of the scale of the project – matching our challenges, we also felt it would be the perfect legacy for our fundraising; but more important than both of these is because we believe passionately in the role this will play in helping children like Seb. Whether it assists in helping a child overcome their fear of an impending surgery, keeping siblings amused whilst their brother or sister is poorly or just allowing for an hour or two or respite from the monotony of being in a hospital bed all day. Many of the children who will be under the care of this Unit, will not understand why they are here or the reason they can’t play with their friends. Play represents the very thing that will allow them to be children again. Whilst some might argue that non-clinical support is not a vital area of investment for CHUF; we would wholeheartedly disagree. You only need look at the impact the Clown Doctors have when they spend time on the Unit to be convinced of that. If you wish to ask more technical questions about this play facility, then please take a moment to speak to Joanne and Vicki our Play Specialist Nurses as they will be able to give you a much greater understanding of why this is so important.

We hope you all feel incredibly proud of what has been achieved here; because it is your blood, sweat and tears that are in the very fabric of this facility. To be able to say that there is such a tangible and positive output to fundraising is not always easy, but I don’t think there is any doubt about that with this playroom.

I would like to make a couple of things clear in case any of you think it’s time to relax; this is not the end of this fundraising journey, it is merely a momentary pause to celebrate our achievements; so please don’t get ideas of changing your mobile numbers or email addresses!

But for today we would like you to celebrate the official opening of this playroom and enjoy the company of an amazing group of people

Check out all the photo’s here: https://www.facebook.com/ivan.hollingsworth/media_set?set=a.10152736631548688.1073741834.522558687&type=3
You can follow us on Twitter: @Seb4CHUF

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My Dream…

If you are expecting me to provide some inspirational words for resolving conflict, banishing prejudice and removing inequalities; then prepare to be disappointed. I have neither the intellectual capability nor global influence for such a vision. I leave that sort of thing to the greats of history like Mandela and Martin Luther King. What I do aspire to do, is articulate the vision I have for CHUF and all those who could be positively impacted by the charity that supports the children’s heart unit at the Freeman Hospital.

When Seb was born with a potentially life limiting heart defect, I felt completely helpless. My personal understanding of being a Father was to protect and nurture your child; yet when he was taken into the operating theatre, I could do nothing other than to kiss his beautiful little head goodbye. Then I consider the emotional trauma that Nadine went through and again feel utterly helpless! Yes I can be there for them and provide the emotional support required when coping becomes impossible. What I can’t do is mend Seb’s heart or provide the structured support that Nadine and other Heart Mums like her so desperately require.

Thankfully we are blessed with people like Mr Asif Hasan (Seb’s surgeon), Dr Richard Kirk (Seb’s Cardiologist) and Paddy Walsh (Seb’s Cardiac Liaison Nurse) who provide clinical and practical support at world leading standards. I could mention Lesley, Jackie, Amy, Kirsten, Norman, Joanne and Simon…but I would inevitably miss someone; the Freeman has so many!

There is something, I can do though…I can work tirelessly for CHUF to help it grow into a charity that can one day support all children and parents not just in a clinical field, but psychological, emotional and spiritual. Sometimes this will mean raising as much money as humanly possible and either pushing myself to the physical limited (100mile24hour run: http://www.seb4chuf.org.uk/100mile2012-video8.html) or make a bit of an idiot of myself by skiing down a mountain in a Mankini (http://www.youtube.com/watch?v=te9FNKWZlvc)!

Let’s be honest though; neither are sustainable, or enough to achieve such lofty ambitions! To grow CHUF into a charity that matches the world leading team at the Freeman Hospital, we need to do so much more. That doesn’t mean an army of idiots skiing down a mountain wearing nothing but a small piece of green fabric made famous by Borat, or people causing themselves physical harm as a result of an ultra-distance run. It means other people becoming as passionate about CHUF as we are. Not just those who owe everything to the unit, but normal people who have no personal link.

So how do we do this?

We try and engage with as many people as humanly possible and create events that perfectly demonstrates the core values underpinning everything CHUF aspires to achieve; healthy living, family, inclusiveness and fun. That brings me nicely on to my ‘dream’

The CHUF Heart & Sole Run (http://chufheartandsole.co.uk/) is the first step along a road to achieving big things. Having a selection of distances (1.5km – kids, 5km and 10k big kids and adults) provides the motivation to get people along and participate; but our event is so much more than just a few picturesque runs in Jesmond Dene. By creating an event that includes food, entertainment, games and bags of family fun we can create something that will not just engage with the whole family, but it will create an entire army of new supporters. But don’t just take my word for it; let Seb and Jack tell you more: http://chufheartandsole.co.uk/herovideo

As the person who commissioned this event on behalf of CHUF, I feel immense pressure as Sunday 15th June draws ever closer. It is a bold step for our charity to invest in such an event and we are relying on the amazing people of the North East, Cumbria and further afield to ensure it is a roaring success.

So back to my dream… I have a dream that in 10 years’ time, the CHUF Heart and Sole Run will be an event that takes places across the entire UK; inspiring children and adults to get involved, enjoy old fashioned family fun and support our wonderful charity. For the time being though I will concentrate on our inaugural event being a success and starting on this new and exciting path with a positive step.

My Mum – Mary

With Mother’s Day almost upon us, I have decided to do something that I should have done years ago; write a blog about a very special lady – my Mum. For obvious reasons it’s a very personal account and I’m not sure whether I should even be sharing it, or if anyone will read it for that matter. Nevertheless I’ll do my usual and forge on regardless!

Mum died at the age of 56 from cancer, at the Royal Marsden Hospital in London with me at her bedside; the sun was shining and she was more beautiful and peaceful than I have ever seen her. In her 56 years she achieved more than most could possibly hope for and touched the lives of countless people. My ambition here is to somehow do justice to an incredible lady.

Mum spent her entire working life in the NHS; Midwife, Nurse, Health Visitor and finally a Breast Cancer Specialist Nurse. It would take a couple of chapters to cover her career and that is not my intention; but there are two things that stand out in my memory, of the impact Mum had on those she worked with. Firstly I remember as a child the torturous supermarket visits that could take 2-3 hours, as seemingly every Mummy in Billericay wanted to hug, kiss and ask her advice. As a parent now, I truly understand the importance of the job she did and the manner she performed it; helping confused and nervous parents through those early experiences is so valuable. The other thing that stands out for me occurred after she died – the Chelmsford hospital she worked at named the waiting room of their breast cancer unit after her. They felt above all her clinical qualities, the compassion she bought to the job and the impact she had on patients and their families was truly priceless.

It would do Mum a huge injustice to define her life solely by her job. At Mum’s core was her Christian faith and a dedication to being a better person through every aspect of her life. When I remember Mum at Church, I can see her smiling from ear to ear and singing her heart out (she had a bloody terrible voice though). Whether it was a weekend away at Greenbelt (a Christian music festival), being a member of the congregation, leading a prayer group or spending time with her dear friends; she was at her radiant best in this environment. During my teenage years Mum ran the youth group at the Church; nurturing, counselling and informing a generation of young people. Many are still my friends and I don’t think will ever forget the impact she had on such an important part of their lives.

I remember a period of Mum’s life when she was a Health Visitor in Billericay, running the Church youth group and working as a drug and alcohol counsellor in Basildon. She still managed to swim, go to the gym, play squash and continue to be an amazing single Mum (if you ever wonder where I got my energy from, then here is your answer).
After Mum and Dad got divorced there was a period between of my life (11-16 years old) where I didn’t see my Dad (thankfully I now have an amazing relationship with him); a critical time for any young man. The media seem obsessed by disaffected young men who go on to a life of crime, drugs and failure. Not on Mary’s watch! Along with the help of our dear friends Peter and Elaine Norgate, Mum set about shaping my character with the perfect balance of strength and compassion. She never forced me down any particular route but instead guided me, allowing me to find my own path. When my sister went to University it was just the two of us left and we forged a relationship based on mutual respect and friendship. The qualities I have in my character are as a result of this period of my life and can be directly attributed to Mum.

I remember Mum telling me about her dear friend Sos (they had been best friends since primary school) and how she had moved to South Africa many years ago with her family. She was desperate to go and visit them, but refused until Nelson Mandela was released from prison. She even wrote to Mandela whilst he was incarcerated and received a reply from the man himself (I wish I could find the letter to share with you). Mum did eventually go to visit the Sayers family on a few occasions and fell in love with the Country, her final visit taking place only 3 months before she died. She enthused about the beautiful scenery along with the warmth of the people…and of course the wine. It was as a result of this, we scattered Mum’s ashes at God’s Window in the Drakensberg Region; and a few years later I proposed to Nadine there.

I was only 24 when Mum was diagnosed with cancer. I remember the day she told me like it was yesterday and I felt my blood run cold! We spent time discussing the details and what the Consultant had said, but then agreed to move on and devise a plan. Having spent a considerable amount of time studying nutrition and being expertly instructed by a great friend Jim Morton, we set about constructing a nutritional, lifestyle and psychological approach that would beat her cancer into the ground. We researched the most powerful antioxidants, vitamins and minerals to cope with the chemo and fight the cancer cells, then planned her exercise around the treatment cycle and finally we adopted a positive mental attitude. Unfortunately cancer doesn’t always play by the rules and after 20 months of fighting we realised it was time to change our approach and accept this harsh reality!

Mum was admitted to the Royal Marsden towards the end of January 2002 and it quickly became apparent things weren’t good. We were told there were no treatment options and it would be a matter of days or weeks. Over the previous 2 years Mum and Dad had become close again (having been divorced for over 12 years) and my sister and I were privileged to see our parents falling in love for the second time. Having received the news Mum may only have days to live, we contacted the Chelsea and Westminster Registry Office and a few hours later in the company of dear friends the Shephard and Norgate family; Mum and Dad were married. Four days later we filled the Chapel at the hospital and had a blessing service; a day that anyone who attended will never forget.

During those final weeks Mum spent in hospital, I was honoured to be taught the lesson of what it means to have a good life. When a world leading cancer hospital tells you they have never seen more visitors, champagne and love for one individual you take notice. What I experienced first-hand was the impact my Mum had on the lives of so many people. Friends travelled from Europe, South Africa and USA to see her smiling face, share a hug and somehow articulate how much they loved her. But despite all these visitors, there would be one interaction that will stay with me until the day I die. I had arrived at the hospital early one afternoon to see Mum, but she wasn’t in her room. I sat and waited for about an hour, when she appeared at the door visibly upset. A lady in the room next door was dying of cancer; she was 24 years old and her mother (a similar age to my Mum) and young daughter were struggling to come to terms with things. Mum had spent the morning counselling and praying with them. At a time when she could have been completely self-involved with her own situation, she found the strength to help others.

My biggest regret in life is that Mum never got the chance to meet Nadine or Seb. I met Nadine 3 weeks after Mum died and it breaks my heart every time I consider how sad this is and how much she would have loved my beautiful wife. Whether it be our wedding day, the birth of Seb and the subsequent diagnosis of his heart defect, through to the trauma of his heart surgery; I wish she had been here sharing every aspect of our lives. During those final weeks, we spoke about all the things she would miss and wept. It was my request that Mum wrote a letter to be read out at my wedding; the wonderful Toby Shephard (Mum’s Godson) took on this daunting task with phenomenal strength. In her unique manner she managed in the space of 3 minutes at our wedding to make the congregation laugh and cry in equal measure!
When it comes to Seb, I just hope that if he can see 1% of Mum’s qualities in me then he will realise what an amazing lady Nana Mary was. Every day I wake up; I aim to do something that would make Mum proud, smile and laugh. She was with me when Seb was in the operating theatre, she was next to me during my 100 mile run and she is with me as I try to teach Seb how to be a good person.

I believe you measure someone’s life not by the years they live, the money they have or the things they own; but instead by the impact they have on others. When it comes to my Mum, she left her footprint on the lives of so many people and the world as a whole; that I am left feeling like the proudest son alive. I love you Mum xxx

Born: 1st September 1945
Died: 25th April 2002

10,000 Calories for CHUF

The challenge of training continuously at Speedflex – Jesmond (https://www.facebook.com/SpeedflexJesmond) until I burned 10,000 calories, is possibly the most random fundraising idea I have ever come up with (not including skiing down a mountain in a mankini). If you consider that I will burn approximately 800 calories in one 45 minute session (working at 90% of my maximum heart rate), I didn’t even know if 10,000 was possible. Taking all of this into consideration, the last thing I expected was for anyone to be stupid enough to join me.

Step up Ben Shephard and Tom May; two likeminded idiots happy to jump at the chance of taking on the impossible. This is further evidence of what people are prepared to do for CHUF (Children’s Heart Unit Fund at the Freeman Hospital), the charity that is so close to our hearts. Maybe I shouldn’t be surprised anymore; after 4 years of fundraising and being continuously blown away by the manner in which people devote their time and energy to support us. However I do believe the day I am no longer moved by such acts of generosity should be the day I pack it all in.

Back to the challenge and the mammoth task of burning 10,000 calories each, in one non-stop high intensity challenge. At 7am and joined by 11 Speedflex members we began; apart from the odd toilet break, food and fluid intake or change of clothes we didn’t stop. It became apparent after 2-3 hours that Tom and Ben were burning significantly more calories than me. Normally my lighter bodyweight is an advantage, the lads took great delight in this reverse in fortune; as Tom cruised along at 1,000 calories per hour, Ben at nearly 900 and me….well less! The only thing I had in my locker was my perceived ‘superior’ experience of taking on Ultra Endurance challenges. In the back of my mind I was planning on cruising past them both at about 8 hours!!!

Tom unfortunately had to stop his challenge at 10 hours (having burned a stunning 7847 calories) due to his flight back to London for training the next morning; it was left to Ben and myself to see it home. The unbelievable thing about Speedflex is the cross section of people that can train together; never has this been more valuable than when you’ve got to spend 14 hours in a room with one person! Every single person who trained with us was amazing and managed to keep our spirits high throughout.

Anyway, in all of my different challenges I’ve always known exactly where the finish line was and have been able to focus on this regardless of the pain; Monday was so much more difficult. Because we received our calorie data at the end of each hour, we had to focus on maintaining the highest possible exercise intensity (around 80-85% of our max heart rate). We reminded ourselves that no level of pain we endured came close to what children like Seb handled with every single day; a great way to focus the mind! I had in the back of my mind the challenge would take around 14 hours, so you can imagine the look on my face when I realised I was going to have to go into a 15th hour…and Ben wouldn’t ! Whilst we always support each, we are also both deeply competitive and hate losing to each other.

The last 30 minutes saw me push myself to my limits, by maxing my rep rate and completing sprint laps of the fitness suite. The 5 members who had trained with us in the last session, staff, Ben (check out his blog: http://www.officialbenshephard.com/news/article/ben-shephard-calorie-blog) and my amazing wife Nadine cheered me on right to the end. Finally at approximately 9.25pm I finished and successfully achieved the challenge I had devised 4 months previously. In Ben burning 10,488 and myself 10,153 calories we achieved something few can lay claim to and neither of us fancy repeating!

As I reflect on Monday’s 14 hours of madness, I am consumed by a plethora of emotions. From the sustained pain, achievement of a target we didn’t know was even possible and then something so much more important. Our fundraising hinges on people like Ben, Tom, Cath, Parry and everyone else involved in Monday’s event. It requires such selfless acts of generosity that are motivated purely by making a difference to the lives of children like Seb. The support we received from the staff and members along with the general public showed how much CHUF means to so many people. Seb’s condition means he will require further heart surgery, so we will be beneficiaries of these acts of generosity.

From the bottom of our hearts – Thank you so very much.
Ivan

You can still support us by donating to CHUF here: http://www.justgiving.com/10000calories4chuf
CHUF – http://www.chuf.org.uk/

Milestone Achieved!

On January 11th 2009 (almost 5 years to the day) our beautiful son Sebastian John Hollingsworth came into the world; the most perfect little present we could have hoped for. 16 hours after he was born, we discovered all was not well and he had a congenital heart defect called Tetralogy of Fallot. We were told without lifesaving surgery he wouldn’t reach his 2nd birthday and with those words our world fell apart. Mr Asif Hasan mended Seb’s heart and the care we received from the entire team, meant we would spend the rest of our lives trying to repay every single one of them.

In September of the same year we started on that path and raised our first few pounds for CHUF (Children’s Heart Unit Fund at the Freeman Hospital). After year one, we purchased much needed equipment for the Unit with the first £33,000 raised. This left us with the question of what next. With our fundraising going more successfully than we could ever have imagined; we needed a target that would both stretch us and create a lasting legacy for all the hard work of our friends and supporters. The target became to rebuild the playroom attached to Ward 23 and develop the outside play area; the small matter of £300,000!!!

4 years and 4 months after we raised our first few pounds for CHUF we have hit this huge target! It feels slightly surreal to be able to announce that our fundraising total now stands at £333,004…that’s a third of a million pounds!

Words fail me; how can I articulate what this means? I have no idea how to thank every individual who has contributed to this success; if I did it would be a very long list! Whether you have run, swam, cycled, baked, sold raffle tickets, attended one of our charity balls, driven a support car or donated some £££’s, you have the right to feel incredibly proud of yourself. Not just proud of helping us raise a serious amount of cash for CHUF, but also for helping to transform the lives of more children than you can possibly imagine.

At some point in the next few years Seb will undergo further open heart surgery. He is unlikely to understand what this will involve or why he is so poorly; all he will want to do is play with his friends. The rebuilding of the playroom and outside play area will bring a smile to Seb’s face and so many other little boys and girls just like him.

So as parents who will directly benefit from this, we want to say a huge thank you for supporting us over the last 4 years and helping to put a smile on so many poorly children’s lives.

Unfortunately this doesn’t mean we are putting our feet up; not just yet anyway!

You can follow us on Twitter: https://twitter.com/#!/Seb4chuf

When Seb was diagnosed with a life threatening heart defect, Nadine and I felt more scared than at any time in our lives. The following weeks and months leading up to and immediately after his surgery the world was a dark and lonely place for us. After Seb underwent successful surgery we spoke about doing something to repay the ‘miracle-makers’ at the Freeman for saving our boy. I remember the conversation as if it were yesterday, as we sat in PICU looking at Seb clinging to life. Fast forward to 21st-24th July 2013 and I have never felt less alone or helpless.

What our C2C4 team contributed over the course of those 4 days, was something truly unique. Each and every one of the team (participants and support crew) arrived with a positive attitude; not only were they about to take on the hardest C2C ever, but they were determined to do so in the right spirit. It is not enough to raise loads of money CHUF (Children’s Heart Unit Fund), or to challenge yourself physically and mentally; for this to work it has to grab you by the heart strings.

Over the course of the 4 days the team achieved the following:

Cycle 140 miles, swim 1 mile open water and run 63 miles; within this each of them climbed over 16,000 feet, took 150,000 steps, drank 500 litres of water and electrolyte, consumed thousands of calories, suffered cuts, blisters, severe injuries and one team member was even taken to hospital to be put on a drip, due to extreme dehydration and exhaustion! Throughout there was never a question about making it to the end at Tynemouth and they never lost sight of why they were doing it.

Whilst many believe our society is in a trough of negativity and self destruction, events of the last week confirms my faith in the human spirit. Over the course of the last three and a half years with the help of our amazing friends and family we have raised £317,000 for CHUF; this is game changing money for a charity of its size.

 

How on earth then, have a relatively small number of people raised so much money; especially when most have no personal link to the Heart Unit? I believe the answer is threefold: firstly people seem to have connected with our story, Seb and the way we have shared our lives with those who care to listen; secondly when you set extraordinarily ambitious goals you discover like minded competitive individuals gravitate towards each other. Finally and I believe crucially, because of how we have committed to spending the money we raise. Our first £33,000 purchased vitally important pieces of equipment that would directly impact on the health of children like Seb. Since then we have set ourselves the target of raising another £300,000 to fund the complete re-build of the playroom and outside play area attached to Ward 23.

This means we don’t raise money to pay for logistics on our challenges (we always receive commercial support i.e. C2C4 Sponsors – Utilitywise), we don’t pay administration costs and we don’t allow the money to disappear into a bigger pot of general funds. Instead we have committed to every single person who has ever supported us that we will guarantee exactly where their money goes. In this day and age that is a fairly special statement to be able to make!

But what does all of this actually mean? Well, it means there is a tangible output to your fundraising, donations and support. It means that when we have built this state-of-the-art play facility YOU will have positively impacted on the lives of more children than you can possibly imagine. Children can spend weeks and sometimes months on the Heart Unit waiting for or recovering from major heart surgery. During this time they are not interested in their medical state; they are dreaming of enjoying life and just being children! All they want to do is play, read, colour, draw, laugh and smile. By providing the best play facilities possible, we will be allowing these children to do the one thing that is crucially important to them and their loved ones – helping them smile.

So when this chapter of our fundraising is over; whether you have run a Marathon, cycled up a mountain, baked some cakes or generously donated some time or money, you can feel content that you made a difference to some very poorly children’s lives.

When the time comes for Seb’s next heart surgery and I am watching him play in the facility that we helped to build, I will probably sit next to him with a tear in my eye and a smile on my face. Because of this we will forever be in your debt and thank you from the bottom of our hearts.

 

You can follow us on Twitter: https://twitter.com/#!/Seb4chuf

6 months ago I wrote a blog about my emotions in the days before Seb’s outpatient appointment at the Children’s Heart Unit. Here we are again; our little ‘heart’ hero visits Dr Kirk in the next few days and to prove my point the only thing I need to change from my original blog is the date of the appointment. So much has happened in those 6 months and Seb is growing into the most loving and beautiful little boy, but the fear remains.

On Tuesday 11th December we visit the Freeman Hospital for Seb’s heart outpatient appointment. To say that Nadine and I are nervous would be the biggest understatement in history; to be honest we’re frightened to death. The place that saved our beautiful son’s life is also the place that saw us both experience unbelievable lows and fills us with fear because of what it represents.

Seb’s congenital heart defect (CHD) ‘Tetralogy of Fallot’ would normally require one major heart surgery when very small (Seb had his when he was 16 weeks old) and  the next time he’d require surgical intervention would be early adulthood when the valve in the pulmonary artery (the artery that takes blood from his heart to his lungs) would need replacing. Unfortunately Seb has a slightly more complex problem (awkward little monkey) so will require at least one additional surgery at some point in the next few years. We were first told this when he was 9 months old and it knocked the wind completely out of our sails. We are told that the problems with his heart should not cause us any concern on a day to day basis and there is no risk with his health or ability to take part in the kind of activities a 3 year old tends to enjoy. We were told to get on with our lives in as normal a fashion as possible and at the outpatient appointment they will assess Seb’s heart function and do nothing until such time as his heart has to work harder as a result of these defects. I wish we could take the advice and live our lives like normal and without the constant fear we seem to feel.

Don’t get me wrong, we don’t live our lives in a constant trough of despair; instead we celebrate every single day with our beautiful little boy, on the basis that we came so close to losing him and we truly believe each day is a gift. However as each outpatient appointment looms, the dark cloud begins to come into view. From about a month prior to our visit to the Freeman, we start to consider that now might be the time Seb needs to go back into theatre. When Seb had his first surgery I can still recall with a frightening clarity kissing him on the head and watching as Nadine carried him into theatre; I sat slumped sobbing my heart out, unsure whether I would see my son alive again. The 6 hours that followed were the longest of our lives as we walked helplessly around Jesmond Dene, and the time we spent on Paediatric Intensive Care was the hardest week of our lives. But all of these things I can cope with, because I know I have the strength to do what is required and will support Nadine no matter what.

My biggest fear is that Seb is now old enough to have a small understanding of what is happening; he won’t just lay there as he did when he was a tiny baby, he’ll expect his Daddy to protect him. How on earth do I deal with that, how do I explain to him what is going to happen in theatre, how do I explain what all the tubes and wires mean post surgery, how do I comfort him as the effects of coming off the morphine kick in? I wish I could take all of Seb’s pain myself and allow him to get on with being a normal child, but unfortunately reality doesn’t work like that. So instead, I have to live in the knowledge that this next appointment may be the time I have to step up and deal with all of these things and if I am completely honest it scares the shit out of me!

There is an element within me that feels tremendously guilty as I write this blog. If you have a healthy child then you will probably think that is quite a strange thing to say; but since we were thrown into the world of having a sick child and more specifically a child with a CHD, everything changes. You meet so many children who deal with conditions far more complex and serious than Seb’s; children who have undergone many complex open heart surgeries, require constant medication and some whose only option will be to have a heart transplant.

Take a moment to consider this reality. The only way your child can live, is for another to die; it’s not easy is it; but it’s real life and it happens? To look at organ donation more broadly, there will be people waiting for heart, lung, kidney, liver transplants right now. In fact in the UK only 31% of us are registered on the Organ Donor Register…are you? Currently more than 10,000 people in the UK need an organ transplant; of these, 1,000 each year will die. That’s 3 people a day dying because not enough people have taken the time to think about the issue and spend 3 minutes completing the online form. I have another question for you – would you accept an organ for yourself or for your child? If your child had a heart defect and the only option was to receive a donor’s heart; or what if your child had Cystic Fibrosis and their lungs had deteriorated so much that they needed a lung transplant…what would you do? I make no apologies for being so direct on this issue because it is serious and if I am honest, I am stunned that such a caring, intelligent and giving Country such as the UK has such a low figure as 31% registered for organ donation. So do me a favour and click on this link now and register:

https://www.organdonation.nhs.uk/ukt/how_to_become_a_donor/registration/consent.asp

To return briefly to Seb’s outpatient appointment on Tuesday; it is unlikely you will hear us celebrating if Dr Kirk informs us he doesn’t need his operation just yet, because the reality is he still needs it at some point in the not too distant future. It just means we can return to our ‘normal’ life and watch as the dark cloud shifts out of sight until its inevitable return in a few months time.

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I can remember the day like it was yesterday; the sun was shining, the air had that smell of freshly cut grass and all seemed good with the world. It was 1985, I was 10 years old and about to start my first ever race – I won! What began on that sunny afternoon at Downham Junior School in Ramsden Heath, Essex; would turn into a lifelong obsession, seeing me through more ups and downs than I could possibly imagine at that innocent age.

For many years I ran to compete, always with that burning ambition of emulating my childhood hero Steve Cram. Whether at the distance of 1500m on the track, or Half Marathon on the roads; I worked tirelessly to achieve my potential.  As with many other boys and young men sport is priceless in developing good character traits and instilling discipline; personally I just wanted to win!

The sport I loved also became the glue that held me together in so many different ways. Whether the divorce of my parents when I was 11, and subsequent breakdown in relations with my Father for the following 5 years; the passing of my beloved Mum when I was just 26, followed only 3 years later by the tragic death of my best friend Paul Davies (Paul died from undiagnosed Cardiomyopathy aged 28 years old), running was my constant. It enabled me to retain some sort of control over life and remained the one thing that could never be taken away. In short, there were times where I felt running was all I had.

After 23 years of training and competing, winning and losing, I decided to hang up my competitive trainers and take a more ‘chilled’ approach to running. Very similar to that day in 1985, I remember it like it was yesterday; whilst out on a training run I suffered a muscle pull that left me walking forlornly home. As I sat at home I knew it was time to call it a day; the decision was made so much easier because Nadine was pregnant with our first child. To say life was never going to be the same again would be the understatement of my life! Seb’s entry into the world bought an immeasurable amount of happiness but also a feeling of utter helplessness and pain.

I have spoken on many occasions of the fear I suffer on a daily basis around the health of our beautiful little boy. This fear drives our support of CHUF (Children’s Heart Unit Fund at the Freeman Hospital) to somehow influence on the future health of Seb and other ‘heart’ children. What I haven’t talked about is how I cope; what stops me from crying myself to sleep every night or locking myself in a room and shutting the world out. The truth is without running; both of these things would certainly be reality and possibly even worse. I have come to realise that running is more than a way of achieving my sporting potential or raising money; it is the safe haven I can retreat to when I fear the worst. On so many occasions as I have completed yet another early morning run, I have found myself dealing with realities I would hide away from in normal daily life. It is almost like it has become my personal therapist, sometimes providing the answers and other times just allowing for quiet moments of contemplation.

Whether in my safe ‘running bubble’ on the streets of Newcastle or as a group, this wonderful activity has become a real source for good. It has been a fantastic way of bringing a group of like minded people together to achieve great things; you only need see the final days run of our three C2C Challenges to witness that. Over the course of our 3 years fundraising I’ve completed more Marathons than I ever did in 23 years of competition and in no way have I taken a more ‘chilled’ approach to running! In an attempt to somehow say thank you to those amazing people at the Freeman Hospital I run with greater passion and drive than I ever did before. It could be said the ability I have for this sport combined with my drive for helping these poorly children has almost consumed me, but I have come to realise this is not necessarily true or fair.

The reasons why I run are exactly the same as when my world fell apart all of those times before – a vehicle to enable me to cope and subsequently heal. Sometimes the things we take for granted are the very things we need so much and until Seb was born I never truly understood the importance or power of my running. When you are dealing with situations in life for which you have little or no control over the world can feel like an incredibly lonely and vulnerable existence. Running provides purpose and meaning to my life, whilst charging me with the strength to get up each morning and face another day.

The Essence of Running

Running is a road to self awareness and self reliance. You can push yourself to extremes and learn the harsh reality of your physical and mental limitations or coast down a solitary path watching the earth spin beneath your feet; but when you are through, exhilarated and exhausted, at least for a moment everything seems right with the world. (Author unknown)

 

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This is the second of a two part blog on training and preparation (read Part I here: https://seb4chuf.wordpress.com/2012/10/09/pick-n-mix-running-advice-part-i-kit-nutrition/). I have titled them ‘Pick ‘n’ Mix’ because it is up to you to take whatever part applies to you and make it personal; I’ve never copied training or dietary advice 100% and neither should you, instead use it to build your encyclopaedia of knowledge that will enable you to achieve whatever your personal goal is.

Training

I started training for my 100 mile run 6 months beforehand and what transpired over those months was the hardest training regime I have ever put myself through. I never approached the kind of mileage of the ‘old days’, instead looking at a more balanced programme that would keep me injury free. The areas I believed to be critical in this programme were as follows: core strength, upper body strength, individual leg strength, and obviously running endurance. One of the biggest considerations in my planning was my history of injuries, so with this in mind I decided when I needed to take the volume up to the highest levels I should think very differently about my training. I have broken down the different areas of my training so you can understand what worked for me.

Core Strength

When I used to run competitively I thought core stability was about how good your six-pack looked or how many sit-ups you could do. It is only recently and thanks to the wonderful advice of Nick Grantham (https://twitter.com/coachnickg) that I have realised the error of my ways. As Nick explained, the biomechanical nature of running is that you need your core to provide quality stability in a relatively fixed upper body position; once you start considering the demands of ultra-distance running this becomes a potential deal breaker. Having spent 3 months of my build up doing some of the hardest and sometimes weirdest abdominal workouts, I went back to square 1 and started appropriate core work twice a day including plank work once a day. This started with 4 sets of 30 seconds front, both sides and reverse plank (see link for guidance: http://sportsmedicine.about.com/od/abdominalcorestrength1/qt/plank.htm). I gradually increased the time up to 4 sets of 90 seconds on all 4 sides daily. I now do static core work 5-6 times a week and see it as an integral part of my daily training regime.

Upper Body Strength

Many runners disregard upper body strength thinking it serves no purpose in putting one foot in front of the other! In my opinion this couldn’t be more off the mark and in fact the appropriate (that word again) upper body strength is incredibly important to successful running. Successful running relies upon your ability to move your entire body forward in the most efficient manner possible. To achieve this you need to be capable of maintaining a posture that keeps your diaphragm open, your spine in the correct position and provide the best template for your nerves and muscles to operate at their optimum. Alongside your core strength, good upper body strength will enable all of these things to happen. The exercises I focus on are all body weight exercises; by this I mean exercises that require you to work against your body weight rather than lifting a set resistance. These exercises include press-ups, tricep dips, chin-ups and my next plan is to invest in a TRX system because this allows you to massively increase the variety of upper body exercises you can perform.

To pay testament to the core stability and upper body strength work I did in the build up to the 100 mile run I never suffered with back problems before, during or after the event. Having spoken to the very experienced ultra-distance runner Chris Brisley (https://twitter.com/TakeaChallenge) core strength is often the thing that causes an ultra attempt to fail

Individual Leg Strength

In the past if I did any leg strength work it was always dual limb work such as squats, with the resistance quite low and repetitions high. For this I have my physio Damon Voss (https://twitter.com/MySportsClinic) to thank for his advice on what would provide my greatest improvements for the ultra run. The first principle was the importance of individual leg strength and the second the importance of maximising the weight you lifted and therefore developing your power. I started my strength programme with a thera-band and spent 30 minutes every night doing a whole variety of leg work and I also included single leg squats. The latter highlighted the massive difference in strength between my two legs and one of the probable causes of my many injuries over the years. I then introduced a second leg strength session which was single leg squats, lunges and eccentric calf work (I did this after my morning run every day). This session was 3 sets of 12-15 reps for both legs and initially started with me holding 5kg dumbbells; over the coming weeks and months I steadily increased this until I had a 45kg barbell on my shoulders. I believe the lack of any significant injuries at any point throughout the last 12 months proves how important these exercises have been for me.

Running Endurance

Obviously I started from a fairly good base, having run for so many years. However I always found myself in a quandary regarding my natural running pace and the most ideal pace for the 100 miler. I made the decision that I would train at my natural running pace 6-7 minute/mile because I believed that would induce the most significant changes in endurance. During the initial 2 months I never ran further than 6 miles, while I focussed on upper body, core and leg strength; then I started to increase my morning runs until 3 months before when I was running 10 miles 5 mornings a week. I think too often ultra runner’s complete unbelievably long training runs at an incredible frequency i.e. 3 x 30 mile runs on back-to-back days. My history of injuries would make this an impossibility, so to compensate I introduced 5 sessions a week on the bike turbo trainer (1-2 hours a day). This allowed me to increase my aerobic workload and continue to develop leg strength without the injury risk associated with running. During those final 3 months I steadily increased my weekly long run from 15 miles up to 30+ miles, always maintaining my natural running pace (the toughest run I completed was 35 miles in 4 hours 15 minutes). The risk to setting a training regime over such a long period of time was losing focus or over-training; so I broke it down into 5 phases which enabled me to focus on the task in hand rather than getting carried away or looking too far into the future.

Recovery/Injury Prevention

I have covered most issues relating to injury prevention in the training section, so won’t repeat myself; the key however is to understand your areas of weakness and build them into your routine from Day 1. Too often we steer clear of the things we’re not good at, when in reality those are the exact things that should have our attention. Consulting with an expert (physio, personal trainer or whoever will understand the demands of your event) is an incredibly important aspect of identifying your weaknesses and how you can counteract them.

Recovery can mean so many things; from nutritional replenishment, utilising compression clothing or aiding your limbs and feet to recover (all covered in Part I: https://seb4chuf.wordpress.com/2012/10/09/pick-n-mix-running-advice-part-i-kit-nutrition/); but for the purpose of this article I’m going to deal with the most entertaining aspect of my training regime…the foam roller and  ICE BATH!!! Friends take great delight when I mention I’m about to submerge myself in an ice bath; but there is a purpose other than bringing happiness to others! In simple terms the ice bath is thought to constrict blood vessels, flush waste products out, and reduce swelling and tissue breakdown. Subsequently as the tissue warms and the increase blood flow speeds circulation, the healing process is jump-started. Having a 10 minute ice bath immediately after a tough or long training session has the most dramatic effect on my muscles recover rate of anything I have ever done.

I also make maximum use of a Foam Roller in dealing with muscle tightness and potential soft tissue problems. Check out The Grid (http://www.triggerpointuk.com/home?gclid=CJ-DiqDzprMCFYXLtAod-l0AZQ) for more details. Spending 10 minutes 3-5 days per week on a Foam Roller will dramatically reduce your susceptibility to injury and therefore allow you to maintain an optimum training level.

Psychology/Motivation

Understanding what motivates you is so important. It’s obvious why I’m motivated to raise money for the Heart Unit that saved Seb’s life; but there has to be something else when the alarm sounds at 5.30am on a cold January morning. There has to be an inner drive to achieve something you didn’t think you could personally do and to feel a sense of pride in yourself for doing so. Psychology is a funny thing though, because it is so personal. A big part of attaining the best psychological framework is how you design your training regime; whether that is who you train with, where you train or the variety within your training. Music is my thing, but others need group based Boot Camps or class based sessions. For me a massively positive aspect is the charity that I am training for and knowing exactly where the money I raise will go. In understanding these things I feel a more personal link and the associated accountability increases my drive and motivation.

 

I believe success hinges on your ability to stay strong, determined and regardless of what obstacle is put in front of you persevere no matter what.

On the road to success, you can be sure of one thing…there is never a crowd on the extra mile.

 

You can follow us on Twitter: https://twitter.com/#!/Seb4chuf

This is the first of a two part blog on training and preparation. I have titled them ‘Pick ‘n’ Mix’ because it is up to you to take whatever part applies; I’ve never copied training or dietary advice 100% and neither should you, instead use it to build your encyclopaedia of knowledge that will enable you to achieve your personal goal.

Before I throw myself into this article, can I make a few things clear? Firstly, at times I refer to specific manufacturers or brands, this is not because I have received free kit or as a cunning ploy to do so in the future; I only endorse things that both work for me and I believe in. Secondly, this is not a twisted opportunity for some sort of self glorification, it is as a result of numerous questions about how I train and what I have done in the past to prepare for certain endurance challenges.

To give you some background on me; prior to taking on fundraising challenges for the CHUF and the heart unit that saved our son’s life, I spent over 20 years as a competitive athlete. Initially running 1500m (pb 3.48) before moving up to road racing and finding a natural place at distances from 5km up to Half Marathon (pb 67.14). Having trained for so long and competing at a reasonable level you would think I knew what I was talking about when it came to training and preparing for running events…wrong! If I knew then what I know now then I think I could have run faster and definitely prevented the numerous injuries that affected my progression as an athlete.

Over the last 3 years I have taken on various events, from running Marathons and the C2C (140 miles in 5 days), endurance bike events, open water swimming and then at Easter this year running 100 miles in 24 hours. All requiring something different and with failure not an option; the pressure has always been immense. Of all of these challenges the 100 mile run was definitely the toughest and for the purpose of these articles I will concentrate on this event and tell you what worked and more importantly what definitely did not!

Footwear

First get your running gait analysed so you are wearing the correct pair of shoes in relation to your running style (neutral or support and what degree of support), then ensure you are fitted with the most comfortable brand (some are wider or more rigid than others, so take your time with this); once you have found the right pair, do not chop and change. I have worn Adidas Supernova Cushion (now called Adidas Supernova Glide) for the last 8-10 years and will not change. Just because a shop is doing a 75% sale on some random pair does not mean you have to buy them; certainly if the result is an injury which costs you 10 times the money you saved in future physio bills! My personal experience the last time I did this was about 10 years ago when I succumbed to a ‘deal’ and ended up with plantar fasciitis because the trainers were too rigid for my foot plant; 5 months of injury and a frightening amount of treatment to repair the damage. The other advice is to ensure you replace your trainers at the correct time. The general guidance is around 600-700 mile point, but this may differ depending on your style of running, running terrain and personal preference. For similar reasons to before, replace your trainers at the appropriate time so you aren’t lying on a treatment table for weeks on end. For trainer lacing technique please see the following: http://www.eatrunread.com/2011/07/power-lacing-for-runners.html, it works for me and keeps my foot perfectly stable.

The one area of my footwear I have only recently resolved is what to wear after training, when my feet are often sore and swollen. This was until I came across AWP shoes (Twitter: https://twitter.com/AWPshoes); they seem to hold my feet in the perfect position post-exercise thus not further straining already sore muscles, whilst also seeming to improve the long term recovery of my feet and lower limbs. They are actually designed to be worn by clinicians working in operating theatres, but I believe their potential in the exercise market is huge. A number of the guys who took part in our recent Ultra-Endurance C2C3 wore the AWP shoes and thought they were amazing.

Clothing

When you live in a Country like the UK, where the weather in winter can be cold, wet and windy having the right clothing is so important. Nowadays all running clothing is breathable and lightweight, so please don’t run in cotton tee shirts (If you want some good deals on running gear and especially clothing check out www.Startfitness.co.uk and their More Mile range). Wearing good quality thermal clothing and lycra tights is my option (I can assure you I don’t have the legs for lycra, but they are definitely the most practical). My recent revelation has been compression clothing; I wear my 2XU long tights for every single run in the winter and during the summer when I get my legs out, I wear compression calf guards. Compression clothing not only reduces the vibration your muscles experience during running, thus limiting workload on leg muscles and enabling improved performance; it also enhances post-run recovery (I tend to wear them for a couple of hours after a long run also).

Nutrition

This is the most important part of this blog that you adapt to your own needs. Nutrition should be something that is completely personal; otherwise the likelihood of you adopting it on a permanent basis is low. My general diet is all about balance; we eat a lot of vegetables, fruit, pulses, beans, fish and chicken; so good quality sources of vitamins, minerals, protein, carbohydrate and ‘healthy’ fats are a constant. On top of this I allow myself treats; I have a little bit of chocolate, ice cream, cakes or fried food from time to time; sometimes more regularly and sometimes not. However I control it, so the likelihood of me going mad and making myself sick on chocolate or having a fried breakfast every day for a month is unlikely.

The part of my diet that I am strict about is my water intake. I consume between 6-10 pints of water a day (depending on my training volume). It is my belief that maintaining the correct level of hydration improves the strength of my immune system, controls my appetite and most importantly enables my body to perform at its optimum when I am training.

In terms of specialised sports nutrition, I am certainly a ‘believer’ in the benefits of this during certain key blocks of my training. My routine required me to get up at 5.30am and train for 2 hours before work and then 1-2 hours after work and because I can’t eat particularly close to training sessions I had to think smart. I would consume a high energy/electrolyte gel half way through my 10 mile run or bike turbo session and then have a carbohydrate/protein drink waiting for me at the end. I also rely heavily on electrolyte drinks when completing my long training sessions. Understanding that you need to replace the minerals that you lose in sweat is critical to maintaining performance, so water is not enough all of the time. My choice is to use SiS (Science in Sports) products, because it is what I am comfortable with. The last thing you want to do is change your products only to discover your stomach doesn’t agree with a new product half way through a 15 mile run!!! Maximising your energy intake pre, during and post exercise is absolutely critical to achieving your training goals and ultimately succeeding in your planned event. Use your training to perfect this so on the day you come to take on your chosen goal you the potential for error is minimised.

During my training for the 100mile24hour run, there was a block of 6-8 weeks where I trained for 16-22 hours a week. During this period I never lost the ability to train at the required intensity, got injured or fell ill; something I put down in part to my diet.

My final advice is that it shouldn’t matter whether you are jogging your first 5km race or taking on an Ultra-Marathon, the attention to detail will have a huge impact on your likelihood of success. I have no doubt the goal to taking on the particular challenge was to succeed, so prepare accordingly and I am confident you will nail it.

My next blog will be:

Pick ‘n’ Mix Running Advice – Part II: Mind & Body

You can follow us on Twitter: https://twitter.com/#!/Seb4chuf

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