seb24

I may have had a crap day but I have kissed my ALIVE son.

seb24

Life Is Too Short To Mess Around

An Interview with Ivan Hollingsworth


Ivan Hollingsworth used to be an aspiring runner and competed nationally. He hung up his running spikes until his world changed on the 11th January 2009. Ivan and his wife, Nadine, were blessed by the birth of their beautiful son Sebastian. The dream quickly turned into a nightmare as 15 hours after his birth Seb was diagnosed with a congenital heart defect (CHD) called Tetralogy of Fallot which, if left untreated, would mean he wouldn?t see his 2nd birthday. Seb started to become ill earlier than expected and, at just four months old, the decision was taken by the surgical team at the Freeman Hospital to perform emergency surgery.
After six hours in theatre, a rollercoaster week in Paediatric Intensive Care Unit (PICU) and four weeks on Ward 23, they finally got to take their boy home. Unfortunately Seb will require further open heart surgery within the next couple of years and again when he is an adult. The events of 2009 have spurred Ivan and his family into charity fundraising mode, by setting up Seb4CHUF, a children's charity to show their gratitude. So far Ivan and his team have raised a whopping £450,000 and Ivan has taken on extreme challenges, including a 100 mile run in 24 hours, to raise money.

Hey Ivan great to chat! Are you sure it’s convenient?

Absolutely. I’ve just got in so I might quickly make a sandwich and then talk and chew! A bit of multitasking!

What sandwich are you going to go for, anything good?

No. What have I got…cheese and ham. That’s so boring isn’t it!

Laughs

I have been really keen to talk to you and to share yours and Seb’s story to our readers, as it is just so incredibly inspiring and also presents readers with a great story of a Dad’s love for his son. 

Sounds great!

As I said on my email to you, there are many people out there who do crazy challenges and many people who have awareness that what they are doing is inspiring. You don’t stand in TED talks unless you have some kind of idea that what you have done, or the way you have led your life, is inspiring to a group of people. And that’s great, I don’t have a problem with that and I don’t think you should shy away from acknowledging that you are someone who inspires other people. However, it’s never been a thing for me, for obvious reasons. People are free to say the word ‘inspiring’ about me but it’s never something I sought, nor is it something I feel particularly comfortable with, which may sound strange. I am always hesitant to think of myself in that way and I would never put myself in the category of some of these others who have done some quite incredible things.

From what you’re saying does it therefore make you feel uncomfortable that you are considered by many to be inspiring? The fact you’ve raised ~£400,000 for this incredible charity, you’ve been given a Point of Light award from David Cameron. These are all inspiring things but is this a tag that doesn’t sit easily with you because of the driver behind all of this stuff you are doing – your son?

 Yes [pause]. I guess it is a range of things. It’s partly because I used to compete as a runner, and I was very driven by success and I trained my arse off since about the age of 10 to be the best competitive runner I could possibly be. And I don’t want this to sound negative, in any way, but I think some people do some incredible things for charity through their physical endeavour. But the fundraising is the secondary thing, the priority is almost the personal drive to succeeding in the ‘impossible’ thing you are setting out to do. And again, I don’t want that to sound negative because achieving goals is brilliant, no matter what the goal is if you can achieve it then that really is commendable. But I feel content in what I achieved as a professional athlete so the praise I get for the physical challenges doesn’t sit right with me because it is not what I seek and it’s not what gets me up in the morning to train. I am also acutely aware that if I am fuelled by the praise I get from other people then I am on dodgy ground. So I guess part of it is that I don’t think I deserve the praise, part of it is that I want Seb to be at the centre of everything we do (rather than me) and part of it is because I know the way my brain works – and for me to do this for years and years I know I need to be doing it for more than just praise and adulation.

That’s a very interesting point. Some people look at the challenge as the driver, whereas some people look at the fundraising as the driver and I guess for you, because you are fundraising for something so personal, and so dear to you then your driver is very different to other people. If you know that money you have raised has meant a new heart unit has been opened up, or a doctor has been kept on because of money you have raised, that must then mean so much more to you than a lovely tweet from someone congratulating you on completing a run. Whereas if someone is doing something incredibly challenging but doesn’t have that same intrinsic motivation then the praise would be the thing that would keep them going when they get into a bad place physically or mentally during a challenge.

Yes I think that’s exactly it. That’s the nail on the head. My sole motivation is to raise as much money as possible. When Seb ran the first mini junior Great North Run he raised £2500 for running one mile. I raised £12,000 for running 100 miles. So who is the better fundraiser? Seb or me. Well he is so it’s important for me to put him at the centre of everything we do. I am in the process now of thinking what is my next personal challenge, it can’t be a gimmick, it doesn’t have to be bigger – there is always bigger things, there’s always people who are going to do crazier things. The thinking I have to do is what is going to raise the most amount of money for CHUF? That is the thing that I am proud of, just how much we have raised. That is something that does sit well with me – I am immensely proud of the team of people who have contributed to putting together such a great total of money.

Great! I don’t think I fully realised that you used to compete as a runner when you were younger? Just how far did you get?

I started out, sounds like an autobiography [laughs] at about 8 or 9 years old winning the schools sports day, so 30 years ago! And at the time we had many great middle distance runners and so I tried to follow in their footsteps. 1500 meters was my distance, my event, and through my early twenties I used to win county championships and competed for the South of England, and then ran for the Great Britain student team when I was at university. Whilst I wasn’t good enough to become a full time professional paid athlete, I was in that group of people behind the top people. And I think injuries and not quite having the ability meant I didn’t quite make it. Injuries meant I stopped running on the track and did road running and even though I am not built for it, I ended up becoming pretty good at it. My best performance was 21st in the Great North Run and was in the top 10 for Briton’s. I ended up running 67 minutes for the Great North Run and in the final part of my career I enjoyed some success, albeit at a slightly lower level.

That’s incredible. My brother has just run the Great North Run for the first time last month; in fact I think he is still running!

Laughs

So was this your career?

No I had a job, out of university I became a Personal Trainer and did this for a number of years and then my mum became very poorly in my mid twenties and for various reasons I came out of that and have ended up in pharmaceutical sales. So no it was never my job but I used to get up before work and train, and train at weekends and late at night and much to Nadine’s [Ivan’s wife] annoyance I used to miss weddings, and couldn’t go on holidays because I had races, and was forever training!

How did you justify that sacrifice you were making when you were not quite at that top level? It seems an awful lot to give up – weddings, holidays etc – for not much in the way of reward.

Yes it’s a good point. As an individual sportsperson if you are not driven, motivated and focused then you just wouldn’t do it. Yes I wasn’t as good as the top top people but I still possessed that same tunnel vision as a Mo Farah or a Chris Hoy in the sense that I wanted to win but my Olympic Gold equivalent was a first place in the North of England Championships or beat my personal best at 10k. So the motivation, and the desire is the same, it’s just you’re focused on your own personal goal. I don’t regret it because life is too short to regret things. The biggest frustration is people not fulfilling their potential. There’s nothing worse than seeing people, who are talented, not even bother. I just find it so sad.

 “There’s nothing worse than seeing people, who are talented, not even bother. I just find it so sad.”

Yes that must wind you up, especially for someone like you who has dedicated his life to something like running. To see someone who is then say more talented than you are but just refuse to put the work in must be very frustrating.

Yes footballers are the obvious frustration but there’s more than that – athletes, rugby players and you could take it to any area of life. I just look at it that loads of people would die to have an ounce of the talent that certain individuals have and for them to then chuck it all away because they can’t be bothered to put the work in is so sad. I just think that whatever you do you should apply yourself to the best of your ability and then you can rest easy if you then don’t quite make it the pinnacle because you knew you could have done no more, anything different. And the thing with my running, even if I didn’t hit the very top, it embedded in me that personal drive, that motivation regardless of up’s and down’s and this has no doubt helped me in my life today.

So your advice to people would be for people to follow any passion that they may have with absolutely everything that they have, and if it doesn’t quite work out then it is not time wasted?

Absolutely. There are many factors why people don’t achieve their potential but if it is down to the fact that people don’t try then what you can’t do is blame any one else. Life is too short to mess around. Have the best friendships you can possibly have. Be the best husband you can possibly be. Whatever it is you do, do it in an excellent way and to the best of your ability.

If we move on to Seb [Ivan’s child], when were you first aware that Seb had an issue with his heart. Was it before he was born?

No it was after. There were question marks just hours after he was born but they were not linking it to his heart. We first found out there was a problem the following morning. So ten hours after he was born I guess. I was getting up in the morning at home, the hospital was just a couple of miles away, and got a call from Nadine [Ivan’s wife] to say it was ok for me to come in. And an hour later we were following an ambulance to the Freeman hospital where Seb was diagnosed with his heart defect. So we found out 15 hours after he was born that he has this.

That must have been hell.

Yeh it is a very strange thing. It’s an insane period of time because you have the sheer joy of being a Dad for the first ever time and the most amazing moment of your entire life only to be told hours later that this absolutely perfect little thing isn’t quite as perfect as you thought and that he will need major open heart surgery to give him a chance of living and that is a [pause] a nightmare. And that’s not even taking into account how Nadine is feeling – a mum who has carried this thing and is now having to face this. It’s traumatic beyond words.

“It’s traumatic beyond words.”

How long was it before Seb had his operation? 

He had his operation 16 weeks after he was born. For his condition the plan would be that they would do the surgery when he was about a year old because this condition is one that doesn’t normally require emergency surgery and he can go a period of time where he would be ok. But he took poorly earlier so he was rushed into hospital and underwent key surgery at 16 weeks old and so was a lot earlier than they wanted and he was a lot smaller, and weaker, which meant it was that much more dangerous.

I just can’t begin to imagine how you must have been feeling. How is he now?

He’s great. It’s funny because if you saw him then fine. He’s done loads of clubs – football, rugby, swimming, gymnastics, dancing and even skiing. He’s amazing and that’s wonderful. I would hope that regardless of if my child had a problem or not that he had the opportunity to experience these things – providing it was safe to do so of course. But if you put your hand on his heart and not even being a doctor you know it isn’t right. So he still has these problem areas with his heart and whilst he doesn’t need immediate surgery now, we have an appointment every six months where they could tell us today’s the day and that he has to come in now. We’re told to get on with things as normal but know that at some point in the next few years he’ll have to undergo further surgery.

 How do you deal with that day to day? Having this grey cloud over you must make it difficult to just get on and enjoy life, or are you forced to do just that?

 Yeh you said the word cloud and that’s exactly the analogy I would use. It feels like a cloud is not over us but that it is on the horizon and at the moment we’re three months away from his next appointment but as the appointment comes closer that cloud will come in as that could be the time that they say he has to go back under the knife. Every night when I kiss him to bed and I put my hand on his chest it reminds me that I may have had a crap day but I have kissed my ALIVE son and I feel his heart and I know what that has been through so any trivial things that have annoyed me that day, I immediately forget them as they’re so irrelevant.

“I may have had a crap day but I have kissed my ALIVE son”

Moving on to the fundraising. All the fundraising is for CHUF (Children’s Heart Unit Fund). I guess I know the answer but why did you fundraise for this charity, and why raise so much money and do so many challenges? 

Why did we start, as bizarre as this sounds one of my best friends Andy (who has done practically all of the big challenges with us) his son has Cystic Fibrosis. His son is two years older than Seb. Randomly I was at Ben’s (Ben Shephard) brothers wedding in Jamaica back in 2008 so just before Nadine had fell pregnant. Ben had just come back from running this marathon on this island called Tresco on the Scilly Isles. Ben is a patron of the Cystic Fibrosis trust, completely unrelated to the fact my friends son has CF and this marathon was run for this charity. It’s the smallest marathon in the world, it’s seven and a half laps of this island and only one hundred people have run it. And Ben told me that I just have to do it.

A matter of weeks later I ‘retired’ from competitive running and Andy and I then decided we would run the Tresco marathon for the CF charity for my friend Andy’s son. At this time Seb had literally just been born and had been taken poorly. I had raised £2500 for the CF trust and Nadine made it very clear to me that I had to go and I had to run it, for all those people who had generously given me their money. But she had a condition – I had to win! So I went, and amazingly somehow I won! And as Andy and I were flying back little did I know that a week or two later Seb would be undergoing his surgery. But as we were flying across the country we just made the silly comment “you know what we should do, we should run across the country.” And that was it, it was just a silly little comment but two weeks later I am in intensive care watching Seb on life support and horrifically poorly and I was looking around the room and nothing told me what the charity was that supported this place. We asked one of the nurses and they told us about CHUF and we said we wanted to pay for that machine that was keeping Seb alive and they told us it was £120,000 and we said that we wanted to buy them one. It may take us some years to do but we would raise that money to buy one of those machines. This was our way of saying thank you for saving Seb’s life. So just a little while later my friends and I ran across the country. And that was it really – the combination of exposure to raising money for charity and now having a really personal cause that was so close to me.

Amazing! Can’t believe you won it! Of all the many challenges you’ve done what was the hardest? Was it the 100 mile run?

Yes, definitely.

That looked like utter hell when I was watching it on the news.

I put myself through hell in the training, I really prepared – as I always do – so I knew I would be able to do it. But the problem was that I got a nerve problem in my back 3 weeks before I was due to run which meant that my quad muscles would spasm, almost like cramp. And so I’d done all my training but for the final 3 weeks I didn’t run a step. I was on the physio table and was having acupuncture and anything I could to help it. The problem I had was that physically I knew, with the training that I had done, that before the injury I knew I could get to 60-65 miles before I had to engage the mental and spiritual strength. I knew I was physically strong enough to get that far. But what happened was my right quad was in full spasm just five minutes after running and my left quad joined it after just half hour. So I ran 23 and a half hours with both quads in full spasm. This meant I was in absolute agony. But the success of my challenge hinged on me doing it THAT day – radio and news crews were following me and it had to be that day. I couldn’t postpone it. So the fact people had raised the money, and the fact so many people were tracking my journey via TV or radio meant I had to finish it. So the physical pain in my legs meant that at 65 miles I’d already used up my mental strength. So it meant I went into a very dark place so so early and it tested every single ounce of what I had. So yeh it was definitely the hardest – knowing that I was in that much physical and mental pain but knowing I couldn’t stop was, aside from the moment with Seb, the lowest I have ever felt in my life.

That’s absolutely crazy. It actually hurts me to think about it!

The amount of money you and your team have raised – that must be the source of great pride?

Yes absolutely. I guess when you stare at something everyday you are more normalised to it. So the figure today doesn’t shock and amaze me but had someone said to me five years ago that we’d have raised this much money it would literally have taken my breath away. However now I recognise how we’re doing it and what the key to raising the money is. I realise that the Coast to Coast runs are very important and I am incredibly lucky that my mates have joined me for that but at the centre of it all has to be Seb. If I am honest, and I tell his story, and how CHUF saved his life then I find that really moves people and moves them in such a way that it moves them into action. If you are prepared to be honest in your story, and be honest about your fears, then I am realising that is a very good way of joining you. And when we opened the playroom and actually showed people where their money is going it makes such a big difference. I’d like to think that as a group we’ve really achieved some nice moments and that people feel proud of what they have contributed, because I will be forever grateful.

Just a final couple of questions. Are you loving being a Dad? Is it the best job in the world?

Oh yeh. It’s the most natural thing to feel and the hardest thing to explain. You’re about to get married and you will love your wife to be more than anything else on the planet. You love your mum and dad, and relatives and you love them dearly because they’re your family but there is a different feeling when you meet your partner who you will spend your life with and who you fall in love with. And that becomes your 100%. The difference is when you have a kid the rules changes, the measurements change. I love my wife 100% but when Seb was born everything changed – he and her became my world. We became a three. The pair of them became my 100%. The thing with us is that we saw Seb when his heart was stopped for 6 hours and he was kept alive by machine and so we’re much more aware of the frailty of life. It is just a huge honour to be a parent and having this little thing that is totally dependant on you. It is mega.

That is very well put. My fiancé will no doubt cry at that when I share this with her.

Laughs.

So how can our readers get involved and help you, Seb and CHUF?

Supporting CHUF (Children’s Heart Unit Fund) is really easy; all you have to do is visit our Just Giving page and donate what you can afford: https://www.justgiving.com/seb4chuf/

You can also donate by texting CHUF99 and £5 or £10. Whilst we would love people to donate money or take on a challenge in aid of CHUF; I think there is something far more important you can do and it is much closer to home. Why not do something for a local charity to where you live; somewhere that is looking to improve the lives of individuals not as fortunate as yourself.

I received my Points of Light Award because of the work we do for CHUF and the positive impact this has on our local community. My dream would be that such awards will inspire others to do what they can to help their local community. Run a Half Marathon, hold a cake sale or volunteer at the local youth group; how cool would the world be if everyone did stuff like this?’

Great! I just wondered if you would share the video you and your team put together about the last few years?

Absolutely. Delighted to! This is the C2C5 video that was put together by Alan Noble.

 


Comments

SPREAD THE WORD: