The Old Bordenian Association

A moving guest post from Philip White – 1983-1987

It’s 1990 and a warm June day in Canterbury. My first daughter’s just been born and I’m as proud a father as anyone can be and I settle back in a chair in the delivery room with Sarah in my arms telling her how great life’s going to be.

Wind forward to November 1996. We’ve moved to Bristol but I’m working in Cambridge, staying there during the week and driving home for the weekends. Sarah’s been unwell for a few weeks with a bad chest. She’s been to the doctor every week for the past 7 weeks and he thinks she has asthma. As she’s still going to school every day (she loved school so much!!) he insisted it couldn’t be anything serious.

I get a call at work, I’m in a meeting – “don’t be alarmed but your wife’s just rung to say Sarah’s just been rushed to hospital”. I don’t remember much of the 3.5 hour drive back to Southmead hospital just outside Bristol but it’s a good job there were no speed cameras on the motorway!! When I arrived Sarah was in the canteen having something to eat – it can’t be that serious after all then I think. When she returns we settle down and wait for the registrar to return with some test results. Several hours later he arrives, results in hand. Apart from confirming that Sarah was suffering from double pneumonia and not asthma, the tests are inconclusive but lead him to believe that Sarah may have Cystic Fibrosis. The registrar refuses to give any info about the condition until he knows for sure and so asks us to take some more tests the following day at another hospital. Sarah’s given some medication and discharged.

I had heard of CF but knew very little about it. I had a fairly sleepless night thinking about what it might mean for us but remember my last thoughts before dropping off – “well whatever we have to face with this, at least it won’t kill her”

The following morning I searched the internet, in its infancy in those days, and read the opening lines Cystic Fibrosis is the UK’s most common life threatening inherited disease. I had to read it several times to take it in – life threatening – I went numb.

I read on. The statistics weren’t good, in the 70’s the average life expectancy was only 5 years old – Sarah was already 6! That had lengthened over the years to early 30’s but many children didn’t make it past their teenage years and that was only 7 or so years away.

We took Sarah for the tests and they were positive. Sarah was admitted to hospital the following week to start her treatment. It was a tough regime that would last for the rest of her life – two weeks of intravenous antibiotics in hospital every 3 months, physiotherapy 2-3 times every day, daily vitamin and antibiotic tablets, special enzymes with every meal sometimes up to 20-30 at a go, nebulised antibiotic – the list seemed endless.

But what exactly is Cystic Fibrosis?

CF is a genetic condition caused by a faulty gene which is carried by about 1 in 25 people in the UK. If two carriers of the faulty gene have a baby then there’s a 1 in 4 chance that the child will have CF. The disease itself affects the internal organs, most particularly the lungs, the pancreas and the liver. There’s currently no cure for CF although the CF Trust in the UK are working hard to find one as are their peers all over the world.

Sarah was doing fairly well until about 2003-4, sometimes even going 6-9 months without needing her fortnight in hospital. But as she got older her condition deteriorated at an accelerated rate. The damage she’d received to her lungs back in 1996 from the undiagnosed pneumonia had been extensive and they couldn’t cope with the additional stresses and pressure from a growing young girl. Her liver started to fail as well and trips to hospital became more frequent and for longer periods until in 2005 she was in hospital for more of the year than she was out. Her consultants tried different drugs, different combinations, different strengths but nothing seemed to work. Then in 2006 the prospect of a major transplant (heart, lungs and liver) was discussed and she went to Harefield hospital for suitability tests.

Sarah had a big decision to make but despite her young age she was absolutely clear on the way forward – she wasn’t going to join the transplant list. This was a difficult decision for me to hear but Sarah explained her reasons. In joining the transplant list, she put her life on hold, constantly waiting for a call that may never come, having a bag permanently packed and ready to go and for a major operation that was full of risk. In her own words Sarah explained that “I’ve been dealt the cards I’ve got and when my time’s up then that’s it”. There was no panic, no fear, no confusion for Sarah. She had always lived her life despite her condition with great dignity and she was prepared to die that way as well when her time came – what could I do but to respect her wishes however hard they were for me to hear.

In September 2007 I was called to Bristol to meet Sarah’s consultants. Sarah had given them a bit of an ultimatum and forced them into telling her mother and I the truth about how ill she really was. She knew in herself and felt that she was carrying the full burden and wanted them to confirm it to us. You can already guess that it wasn’t good news and I was told that they had exhausted all the options and were now into a phase of making Sarah as comfortable as they could. They estimated that she had 12-18 months to live. I didn’t really hear much of the rest of the conversation but they wanted to ensure that I understood that Sarah had requested not to be given any resuscitation. Sarah didn’t want to be kept alive by machines and wanted to die entirely naturally.

I picked her up from her house that afternoon – she lived on her own in a flat as she was determined to experience what life was really like – and I drove her home with me from Bristol to Maidstone. She asked me openly what I thought about what the consultants had said and was quite happy to talk about the situation. She said that for her it felt like a weight had been lifted from her shoulders as we now all knew how serious things were – she did look as though she’d physically relaxed and we had a great weekend.

Sarah signed up for a 2 year accountancy course at college and started organising a charity ball to raise money for the hospital. We made plans to do all the things we’d talked about for ages and not managed to fit in. We were both going to make the absolute maximum of the time we had left together.

Sadly the predictions of 12-18 months were wildly optimistic and after a 5 week stay in hospital in November, Sarah passed away on the 5th December 2007 – she was only 17 years old. I was at her bedside for those last few weeks and had the great privilege of holding her hand as the pain finally left her body and she was at peace. She’d given detailed instructions on the arrangements for her funeral, white coffin, bright colours, party in a local pub afterwards!! Over 200 people attended the service and the funeral director had to get extra pages for the book of remembrance – she had touched so many people so very deeply in her short life and no-one more so than her proud old father.

So what has this got to do with my fellow Old Bordenians?

Well, with Sarah clearly having given so much to so many, and with her mother continuing the plans for the ball, what could I, an over-weight, under fit, 30 something do to leave a suitable legacy for Sarah’s life. So like so many others before me I turned to the thought of marathon running in order to raise money for the Cystic Fibrosis Trust who not only provide advise and support to families affected by CF but are leaders in medical research into finding a cure for the disease.

But Sarah was no ordinary girl and so no ordinary marathon would be good enough

So I’ve decided to undertake 3 marathon’s on 3 different continents in very different conditions.

The Big 5 Marathon – on the 28^th June 2008 I’ll be running through the African Savannah, unprotected from the natural wildlife (some of which have very big teeth) and over tough dirt tracks.

The Polar Circle Marathon – on the 18^th October 2008 I’ll be in Greenland to run over a mixed course of gravel tracks and snow in temperatures of -10^oC.

The Tenzing-Hillary Everest Marathon (entry pending) – on the 29^th May 2009 I’ll have arrived at Everest base camp @ 17,500 ft to begin the 26.2 mile run to Namche Bazar.

So how can you help? Well, these are massive challenges and I can’t do this on my own, I will need help ranging from raising huge amounts in sponsorship (I hope to raise at least £25k but hopefully £100k) to simple moral support just to get me to the start line. Listed below are some of the areas where you can help and more details are included in the attached file:

• Sponsorship – personal and corporate
• Logistics donations (equipment, flights, accommodation, etc)
• PR/Media etc
• Website build
• Medical support
• Training support
• Dietary and nutritional support
• Planning & organisation
• Trip companions (running and non-running)
• Moral support and generally keeping me on the straight and narrow!!!!

So if anyone thinks that they can help in anyway at all to achieve these goals then let me know. You can contact me directly through e-mail Philip@white3320.freeserve.co.uk and you can sponsor me at www.justgiving.com/philipwhite1

For more information on Cystic Fibrosis then please go to www.cftrust.org.uk

Philip White

1983-87

If you’d like more details on how you can help, then please read on ..

Sponsorship

As I mentioned, I’d like to raise at least £25k (and ideally £100k) but this is a massive challenge and I’ll need all the help from my friends I can get to achieve this.

There are two main sources here, corporate and personal.

I’m hoping to set up a website to publicise and cover the 3 events and as a mechanism for attracting corporate sponsorship and as an easy portal for personal contributions so more on that when it’s built.

One suggestion I’ve had already to help with personal fundraising is to recruit 25 friends who are prepared to pledge to raise between £500-£1,000 toward the total pledging to make up the difference to their pledged amount if they are unable to raise the sponsorship/donations. Three people have already signed up to this idea so if you think you can help in this way then please make a pledge.

Logistics Donations

The aim of these marathons is to raise money for the CF Trust and so every penny donated will be given to the Trust, there are no deductions for my costs. But the truth is, the cost of this exercise is high. Ignoring my loss of earnings (sadly we self employed consultants only earn when we’re at work) the cost of training equipment, flights, accommodation, entry fees etc is going to be in excess of £10,000.

So if anyone has any influence with the likes of BA or Virgin and could provide free or heavily discounted flights, sports wholesale or retailers who could supply appropriate training shoes, and running gear (and vast quantities of energy drinks and bars!!), etc then these donations would be very much appreciated.

Also as the Everest event gets closer, if anyone has access to high altitude training facilities (I know there are a number of quite exclusives gyms in London with the equipment) then that would also be very helpful.

PR/Media

Hopefully the CF Trust can provide a big PR push but if anyone has good PR skills or knows people who do (anyone best buddies with Max Clifford??), have media contacts etc then don’t be shy in coming forward as the more publicity we get the better.

Website build

In this day and age a good website is essential to getting the right level of publicity and in drawing in corporate sponsorship (potentially through advertising as well). If anyone can help by building a website, which would cover things like event details, training plan, blog, advertising links, sponsorship links, etc. then your help would be invaluable.

Medical support

These are 3 very demanding races in very different and extreme conditions and so it would be great to know that I’m fit and healthy and continue to be so during my training programme.

Advice on medical issues relating to the 3 environments, vitamins and supplements appropriate to the conditions and to my training programme and any other relevant advice would be greatly received.

If anyone has access to or can get access to this kind of medical knowledge and support I would be a real help in ensuring that I actually achieve the challenge.

Dietary and nutritional support

If anyone has expertise in this area or knows of good websites I could refer to then let me know.

Training support

Long distance training can be a very solitary experience.

I’ll be mixing gym work with outdoor runs and also taking part in some half marathons (two already booked Hastings on 16^th March and Sleaford on 1^st June) and maybe some 10k runs as well to build up race experience. If anyone wants to help by running with me for training sessions or joining in the actual races I’m entering then that support will go a long way.

Planning & organisation

Hopefully I’ll be spending most of my spare time trying to get fit enough to run the marathons so if anyone wants to take a leading role in planning and organising the PR, TV appearances, training schedules, sponsorship drives etc then you’ll be a vital member of the team

Trip companions

Due to family commitments (& having so many children), Melanie won’t be able to join me with all of the adventures so if anyone wants to join me on any or all of the trips then they still have spaces for both runners and non-runners. Let me know and we can co-ordinate accommodation, flights etc

Moral support and generally keeping me on the straight and narrow!!!!

This is a 17 month venture and so I’ll need lots of moral support to keep me going.

Anything from checking the blogs regularly to see how I’m doing, making sure I don’t go for that incredibly yummy chocolate doughnut in the shop window or making me go out on the road when I’d rather stay a home and watch the TV will all be helping me to reach the final goal.

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