Children's Charity for the Freeman Hospital

Why does Seb4CHUF exist?

With this being my first ever blog I am a little unsure of what to write and if anyone is interested in what I have to say. It seems a little strange for a little known bloke living in the North East of England to start writing a blog for public consumption; but then 3 years ago our lives changed in a way that meant we would never again look at the world in the same way, for this reason my Seb4CHUF blog is begins.

For those who are unaware of our story I will try and give you an insight.

On Sunday 11th January 2009 our beautiful baby boy Sebastian John was born. Like all other new parents we were overwhelmed with an emotional cocktail of euphoria, unbelievable love and a little bit of fear of what lay ahead. This fear was the same as every other parent, for we believed Seb to be a healthy little boy. Then 16 hours after he was born, Seb was taken away from us and rushed in an ambulance to the Freeman Hospital in Newcastle upon Tyne. As it dawned on us that our little man was not 100%, we felt like we had been dropped into the worst nightmare imaginable (little did we know there would be worse to come). When the Consultant, Registrar and Specialist Nurse entered the room we both sank into a dark cold place, as we were informed our Seb had a Congenital Heart Defect (CHD) called Tetralogy of Fallot.

Apparently this condition requires treatment within the first 12 months a of a child’s life (left untreated it is unlikely Seb would reach his 2nd Birthday). The weirdest thing we were told in that room, was the typical warning signs for a baby with ‘Fallots’; apparently you have to look out for the child crying, not just a normal cry but a more high pitched cry which is followed by the child going limp and blue – they call this a ‘blue spell’. Taking into account Seb is our first child, how on earth do you know what is a ‘high pitched cry’? The Team at the Freeman did their best to reassure us, but let’s be honest, is that ever going to be possible? Our job now was to start family life without Seb’s CHD taking over our; we just wanted to be a happy little family.

Unfortunately Seb didn’t quite make it to 12 months for his repair surgery and suffered a major ‘blue spell’ around 16 weeks of age. You can tell the severity of the situation when your child is moved to the top of the surgical list; Seb underwent over 6 hours of complex open heart surgery on Tuesday 5th May 2009.

What greeted us in the Paediatric Intensive Care Unit (PICU) at the Freeman on the evening of Tuesday 5th May was every parent’s worst nightmare. Seb had tubes and wires everywhere, his breathing and heart was being controlled by machines, he was puffy all over and was almost ice cold to touch (this aids healing). Now I quite happily accept the label of being a control freak, but suddenly to have zero control is unbelievably scary. I thought the job of being a Dad was to protect your child from nasty stuff and ensure they grew into strong, healthy and wonderful human beings; yet here I was with the reality that my Son may die! Those first 24 hours after Seb’s surgery were rough (the photo of Seb on our website was taken because we thought it might be the last photo we ever took of him). We watched as machines beeped and alarms sounded, bloods and gases were taken and emergency procedures carried out (we did leave during these). Knowing a little bit about physiology became a burden as you saw quite how fragile the situation was. Slowly Seb started to get stronger and after a week on PICU we were moved down to the ward; 5 weeks after this we finally got to take our little Superhero home and we started the next chapter of our lives.

The specific nature of Seb’s condition means he will almost definitely require further open heart surgery in the next few years and then again when he is an adult. He visits the Freeman Hospital for his outpatient’s appointments every 6-9 months to check his progress, but we are in the hugely fortunate position of not requiring constant medication or day to day monitoring. Seb is allowed to be a ‘normal’ little boy and for this we are eternally thankful.

So where did Seb4CHUF come from?

How do you say thank you when someone has saved your child’s life? The answer is you can’t, but you can sure as hell try!

The charity CHUF (Children’s Heart Unit Fund at the Freeman Hospital) has existed since 1979 and continues to support the amazing work being carried out every single day at this ‘theatre of miracles’. Nadine and I decided we would set up a fundraising arm of CHUF, named ‘Seb4CHUF’ to raise money and awareness for CHUF. In September 2009 at the Great North Run we received our first few pounds in sponsorship and set out on a journey that would change our lives forever.

I remember the very first fundraising presentation I gave about Seb4CHUF, as I explained to the audience that we intended to raise £120,000 in the next few years. One of the chaps raised his arm and asked with a slightly quizzical expression on his face how much we had raised so far? I answered we had raised £1,200. I can only explain his look towards me as a combination of insanity and delusion. Well, just over 2 years after we started we’ve just passed the £173,000 mark! This huge amount is a result of the hard work, blood, sweat and tears of so many people; far more people than can be listed here (you know who you are).

I believe this is what is at the ‘heart’ of Seb4CHUF; we can only achieve our dreams with the help and support of others.

Some of the events that have taken place for Seb4CHUF are listed below:

–          Great North Run 2009, 2010 and 2011

–          Great North Swim 2009

–          Edinburgh Marathon 2010, 2011

–          Collection Boxes in Mops Hairdressers and O’Briens at the Team Valley, Gateshead

–          Kielder Marathon 2010

–          Brentwood Half Marathon

–          Morgan’s Gym 12-hour Spinathon (South Shields)

–          Mankini Skiing

–          Numerous Birthday donations (Peter & Elaine Norgate, Terry Wall, Jackie Snape, Maggie Smallwood

–          Seb4CHUF C2C Run 2010

–          C2C Ball 2010

–          Seb4CHUF C2C² 2011

–          C2C Handbags & Gladrags Ball 2011

–          Harrison Foundation

–          Wearside Rotary Club

–          Christening and funeral donations

–          Cardiff Half Marathon

–          Baby Network – Nearly New Sale, North Shields

So what is planned for the 2012?

We have a Dodgeball competition taking place in Durham, on January 20th with teams filling up fast and other big events planned for later in 2012; but my real focus is my biggest physical challenge to date. On 6th/7th April (Good Friday/Easter Saturday) I will attempt to run 100 miles in 24 hours down the coast of North East England and finishing at Tynemouth.

This will test me physically and psychologically, if you follow us on Twitter ( then you will be aware of the level of preparation I am putting into this challenge. My aim is to raise as much awareness for CHUF (and hopefully a little bit of money along the way) both in the build up to the challenge and during it. Watch this space as I share my journey towards the #100mile24hour run.

So with just a few days to go until Christmas I want to wish you all a very Merry Christmas and a Happy New Year. At almost 3 years of age, Seb is starting to understand what Christmas means and we are all looking forward to sharing some quality family time together. Whether you are religious or not, Christmas is a wonderful time to share with family and friends, to remember those who are no longer with us and be thankful for everything we have. I can guarantee you we will be raising a glass to our little Superhero Sebastian and those at the Freeman Hospital who saved his life.

I’ll catch you all soon.




Comments on: "Why does Seb4CHUF exist?" (2)

  1. For your first ever blog… You were brill , you have summed it up amazingly, I look forward to more, love to you all, and all the best .. Susan Jackson xxx

  2. Welcome to the world of blogging! Congratulations on a fantastic amount of fundraising and good luck for the plans for 2012

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