Mark Clarkson – his 20 mile run for the PSF UK!
I saw the Channel 4 programme about Jordan and felt compelled to raise some money & find out more.  I surfed the net & found the PSF website got a contact number & then rang Tracey asking for some official sponsor sheets.  I’d already knocked up some unofficial sheets on the PC & formulated a vague idea that I’d run 20 miles non-stop.  I’d previously run a few half marathons (13.1 miles), however I had not run further than 15 miles at any one time.  I felt that the distance of 20 miles would make the challenge a greater one for myself & also encourage “would be” sponsors to be more benevolent.  I ran the idea past Steven & he was happy to lend his time & efforts to the venture.  We pencilled in the date of Sunday the 1st of October to do the sponsored run, I had previously been out in the car to detail specific landmarks and mile markers & had chosen a largely flat out & back course that would start & finish at my house.  Steven ‘Boss Hogg’ Pyrah was to be my logistics man, fund raiser, water carrier, photographer, (general back up team, come dogs body) & had forgone a night on the ale to accommodate this position.
I had spoken to a few team mates at Keighley & Craven AC about my planned venture & they had offered me a few words of wisdom.  It was with these in mind that I set the alarm for 6.30 a.m. & prepared for the 9 o’clock start with a bowl of porridge & a drink of hot water & honey.  I also prepared water bottles, glucose tablets, energy gels & cereal bars that could be ‘downed’ during the event.  All these I packed into a bag & at 9 o’clock along with my digital camera I passed them over to my trusty ‘second’.
The weather was fine and I was off a down hill stretch of half a mile meant I made the 1st mile in a respectable if not slightly too fast 6 minute 30 seconds, I was now on the flat & settled into a metronome 7 minute 10 seconds mileing.  I reached the half way mark in Skipton  in 71 minutes & the half marathon point in around 1hour and 33 minutes.  The flat, fast runnable route was beginning to take its toll.  The lack of hills meant that there was no real let up from the pace I was setting, (although this sounds stupid, believe me it is true) & I was really struggling from around the 15 mile mark.  My pace dropped off & I hit the wall at 17 miles.  An experienced Keighley & Craven club member explained that the body when running is fuelled by carbohydrates up until about 16 miles, when the carbohydrate supply is depleted the body runs off of fat supplies.  This transition of energy supply from carbohydrates to fat results in a great deal of pain & is commonly referred to as the wall.  17 miles to 19 miles were the worst period of the run & I slowed considerably.  I tried to close out the pain & think about the extra fiver I’d receive if I continued.  The last mile was bearable, even though I had to run half a mile up hill (bad planning on my part).  Just over 2 & a half hours later & the job was done.
Thanks must go to Stephen Pyrah & all those who sponsored me especially those at West Yorkshire Pension Fund.  In writing this article I also was pledged £25 from my employer at Kilmeny Surgery, this took the grand total raised by the 20 mile run to £303.50.  Thanks to everyone.  After I did this run I saw a headline in a running magazine it read ‘Top Tips for Marathon Running’, I thought to myself (bearing in mind I only ran 20 miles, not 26.2 miles) I have a top tip for Marathon Running, don’t do it.  That said I have promised myself a Marathon run before I reach 40.
Cheers Mark

Melanie Smith – Bristol Half marathon for the PSF UK
Amount raised – £249.50
The reason I chose to support Proteus stemmed from watching a documentary on Jordan and the condition.  I watched this in awe of him and everyone affected by this condition. I was amazed at how you all cope with this and still try to give Jordan a normal life.  My heart went out to the little boy that just wanted to play football with his friends, and why shouldn’t he!
I had never heard of the condition before and the programme inspired me to find out more, I was amazed about how much more the medical community still need to find out about this terrible syndrome.
I wanted to help and was running the Bristol Half Marathon for the first time so I decided I would collect sponsorship for the Proteus charity.  I wrote to Tracy and asked if I could get some information to give to people when asking for sponsorship, I noticed that most people had not heard of the condition so it was good to raise peoples awareness.
The training was really hard as it was the first time I had done anything this big.  I was very nervous on the day and luckily had a friend running with me, it was still very hard but every time I struggled I just kept thinking what I was doing this for and Jordan and I managed to get through it (the last 3 miles were hell!).
My donation is just a small drop in the ocean but if nothing else it may have raised the awareness of the syndrome to the people who sponsored me.
I am running the Bristol marathon again next year and will definitely be collecting for Proteus again, I would definitely encourage anyone to do something like this, it’s a hard 13 miles but it is so worth it at the end.

Michelle Cooper – Bristol Half marathon for the PSF UK
Amount raised – £120
Michelle contacted me by email after watching Jordan’s documentary, she wrote:
I just wanted to say how moved I was by last night’s documentary on Channel 4 about Jordan. He’s a beautiful brave little boy and he’s a real credit to his family. As a mother of a 9 yr old boy myself with a lifelong illness, I really do feel for his parents and my heart goes out to them. I am running a half marathon in September and whatever I raise I would like to donate to you.  If you do any fundraising events in the future please do email me as I would love to help. Regards Michelle  P.S. Please give Jordan a big hug from me
Here is a picture of me just after I finished the marathon feeling battered and bruised!

Sarah Selwood – CHARITY DAY AT HER COMPANY KEYLINE BRANDS
Raised £360.00
Here is a photo, it shows myself, in the middle front row, with Katie & Carol who helped organise the sale.  We got together a lot of our products, we are health & beauty company, and had a staff sale throughout the day.  We are pictured with some of our ladies who work in the factory who purchased some of the products.
MY SISTER VIKKI FUNDRAISING IN AUSTRALIA!
Hello Tracey,
Every month at my work, each department takes it in turns to put on a charity morning tea for whatever charity they like. This morning was my department’s charity morning tea, and we chose PSF UK For the past month my friends at work, Claire and mum have been feverishly selling Cadbury fundraiser chocolate to raise funds. Also, we managed to get the restaurant up the road to donate a lunch voucher and the local shop to donate a huge bottle of chardonnay both to be raffle prizes.
Our department bought lots of food for the morning tea and all staff make a gold coin donation to come in, have something to eat and hear about the charity they are supporting.
I am the worst public speaker in the entire world, so my boss kindly did the speech and we played ‘Boy in a million’ in the background.
Everyone has been so generous and even though the company is now quite small (approx 100 people), we managed to raise a total of $563 for PSF UK, a cheque will be on its way next week.
The event raised £225.19 for the PSF UK

HALLOWEEN PARTY ON THE BARGE

Thanks to Geoffrey and Andrea Child, Nick and Jo Elmes, Dave and Lin Stewart and Friends who raised £2083.33 for the PSF UK

Geoffrey writes…………

The Halloween Party, held in “The Barge” on Saturday 29th October, was a wonderful success. The reason for this event was to raise funds for PSF. The foundation uses all monies raised to support families and to help those that suffer with the many problems of Proteus.  Some years ago, six of us had the “brain wave”, of holding a dinner party and making an admission charge. Eight had a wonderful meal, and at the end of the evening PSF were given a cheque. What could be better we thought!
From that day, we six have arranged and conducted various PSF fund raising events. Some of you have been so good, in that you have supported us at each and every event. Thank you so much.
Special thanks to (in no particular order): -

• The organising committee, for the planning, cooking and raffle prizes.
• Lin, the singer. (You were fantastic, and have so much stamina! How did you manage to sing for so long)?
• Scott & Mark. (You are great guys, even without your breathtaking magic. Thanks once again).
• Cyril, not only for the use of the barge, but for the many items you donated for auction and for conducting it. (No one realised you sang as well!) Thanks also to your staff!
• Finally, all the many friends that again donated a prize, bought tickets (even if they could not come), and those people that simply sent us money or cheques, just because they support PSF.

Fundraising for Jordan

A local lady Sue Simms writes about her climb up Kilimanjaro.  Sue raised over £2000 for Jordan’s fund – thank you Sue, you’re one in a million!

While one objective was to raise funds for this very worthwhile campaign it was also to raise awareness about the disease of Proteus Syndrome and the difficulties that individuals and families must endure as a result of a child’s diagnosis of this disease.  I feel that both of these objectives have been achieved to some extent.

My own personal experience was to correlate the effort involved in scaling a Mountain of huge proportions – Kilimanjaro at 19,351 feet high, with the daily trials and efforts that Jordan and his family must undergo.

Of course there can be no real correlation, my effort would only last a week, while Jordan’s is for a lifetime.  However, putting oneself in an uncertain situation of considerable discomfort and pushing your body to extremes that, during a daily life in Bexhill-on-sea would never happen, was perhaps one way that I could touch the feeling of effort and exasperation that are a part of Jordan’s daily life.

On Monday 22nd August I had watched a T.V. programme about Jordan and Proteus Syndrome.   I was bowled over by the tremendous courage and fortitude of this beautiful young boy, just 10 years of age and how, despite his suffering he strived to play football on his badly formed feet and legs.

I was so impressed with Jordan that I just had to write to him and tell him.  On the evening I watched the programme I should have been out running – training for the walk to the top of Kilimanjaro, for me a huge undertaking.  I wasn’t out that day because my knee was swollen and a bit painful but having watched what Jordan was going through I felt ashamed that I was complaining about a swollen knee – I was attempting to climb a mountain in a few weeks but he had been climbing one every day of his life, a life that has already been incredibly difficult and is not going to get easier.

I resolved to do what little I could for him and in my letter said that I wanted to take a picture of him to the top of Kilimanjaro and also that I would try to get sponsors for my walk to the top.

Here follows a taste of our last and most crucial day to the top….

After 6 days of hiking and camping at varying and increasing altitudes we arrived at Barafu, our highest campsite at 15,091 feet.  This can be a busy little spot, with those arriving to go up the mountain meeting up with those who have just completed it.  On first sight one wonders where the tents will go it simply seems to be a mass of large rocks set on a tiered terrace overlooking the massive crags of Mount Mawenzie, a Cathedral like outcrop on the distant horizon with the red dusty moonscape before it.

At this altitude breathing is difficult and with our tents squeezed in between large rocks the effort required to get to the toilets, inevitably situated some fifty feet higher, meant setting off well before you needed to go.  However the stench was so appalling from these ‘drop toilet shacks’ that quite frankly one had to seriously consider the effort required over the need to go.  Believe me after 6 days of these drop toilets I had seriously mastered the art of postponement!!!

We took an early dinner, yet more large quantities of pasta (it’s surprising how much you can eat), but then this is not a walk in the park!  Kilimanjaro had shown us some amazing scenery, rugged and beautiful and one everlasting memory of -Dust, there was not a surface or orifice that it did not creep into!

Equipment Preparation for the climb occupied the hour or so after dinner when I donned pretty much all of the clothes I had taken with me.  We were to be woken at 12.00 midnight for ‘breakfast’ and so I had decided that, apart from Boots and Duvet Jacket (a thick down coat) I would be ready to go.  With all those clothes on there was slightly less need that night for the two sleeping bags (yes two), though temp was probably down to – 10C.  All our previous nights had been calm, no wind, so it was unsettling that this night should be different and what seemed like a howling gale was brewing.  Further up the mountain this was to bring the temperature down to –21C and the 6 layers of clothing had been a wise choice, despite Mitchelan Man looks!

At 1.00am after porridge, tea and biscuits we set off up what can only be described as seeming like a 1250 metre sand dune.   The speed that we had been travelling during our 6 days on the Mountain was slow – Pole Pole (Pronounced Polee Polee, Swahili for Slowly Slowly) this had been engineered by our guides and had been appropriate to aid acclimatisation and avoid over exertion.  The speed which we now went up the mountain was even slower – a snails pace, not that we complained, to attempt anything faster would have been impossible, probably suicidal!   You needed to kick your feet into this gravely sand, (as if climbing through snow) to get any grip, the wind bit into you and further sapped your strength and every breath you took simply wasn’t enough!

We all had head torches and followed each other as if attached, snaking our way up the mountain with the lights of other forward parties twinkling in the distance.  Every now and then you would glimpse a person passing you by – on the way down, too early for them to have summated these were people who’s objective had eluded them and were now retreating in defeat.   So occupied with my own efforts to ascend I don’t recall looking at any of these people indeed at the time it scarcely mattered to me who they were such was my own concentration of effort.

We diligently followed our leader, Obote, who had probably done this trip a hundred times and more, I likened it to the King Penguins in the South – all huddled together against the cold moving at a slow waddling pace.  However, only stopping every hour for a break and a drink of water was difficult for me and with everyone needing to walk at their own pace the party of 11 began to break into smaller groups.  First the 11 became 10 as one of our party had to descend, then with a ratio of 2 climbers to one guide we broke into smaller groups.

I don’t really know where those first 5 hours went, that’s an awful long time to be walking in the dark in a howling wind with –21c temps, scarcely putting one foot in front of the other, often just half a foot and then that sinking into the dust and using so much effort for that one step.  We didn’t talk to each other, you couldn’t, you were locked in your own thoughts, you had your own metronome beating away creating an almost hypnotic state.   In some ways I was rather glad to have broken away from the main group, while the tide of such a group can help you along it can also take over your sense of personal control and awareness of your own needs, I simply needed to drink more often, had I allowed myself to travel at their pace without so much water I would have dehydrated, something that happened to another member of the group who went with the tide!

By sunrise I hadn’t quite reached ‘Stellar Point’ – the first objective near the top (at 5700 metres), a point at which some people choose not to venture further, or rather not choose, simply can’t go further!    If you haven’t experienced exertion at high altitudes (and anything over 18,000 feet is classed as Extremely High Altitude) then it’s hard to understand the effort required to go on or the extremely uncomfortable effect it has on your body.  Any over exertion, and that means simply moving at normal speed rather than slow motion, seems to put your body into a mini convulsion.  A kind of feeling of being turned inside out starts in your groin and gravitates it’s way up though your body, you feel sick, you feel heady, stopping and breathing deeply is the only way to bring relief (other than descending of course).

To be honest I don’t know what time I reached Stellar Point but the view was immense, I was higher than the aircraft that had brought us there which flew at 18,000 feet between Mount Kilimanjaro and Mount Meru (14,980 feet and a later objective).  At this height you can see the earths curvature.  We stood for a short time only, taking in the sight of the sun rising over a thick cloud layer and casting it’s rays on the glaciers now appearing on the edge of the summit ……before setting off once again for another one and half hour or so.

That last haul certainly required a monumental effort, though by now at least you had something to look at as the path levelled off with Uhuru Point in the distance, the immense Glaciers revealing their beauty, their awesome size, rippled like the whirls on a birthday cake, or crisp and sparkling like a thousands crowns glistening in the sunlight.  I wasn’t sure at first whether it was the shear beauty contrasting so strikingly with the moon like volcanic harshness that made me cry or simply the release of emotions of a spent women.  I suppose it can be likened to the effort required to achieve a medal in the Olympics, you need to concentrate so much effort into the achievement that when that moment finally comes you have nothing left to hold yourself together.

In fact such was the impact of the experience that it has embedded a visualisation of the moment so connected with the emotion that I cannot separate them and the memories and tears will go hand in hand for years to come.

Thousands of people do this mountain every year, it’s certainly doable you just have to be prepared to train hard and not give up, but also be aware of the dangers of Altitude Sickness.  Kilimanjaro is particularly dangerous because of the rate of ascent from virtual sea level to 19,351 feet and travelling through five distinct climate zones, moving from base to summit is like walking from the equator to the North Pole.

We are all designed differently and acclimatisation is not gender, age or fitness dependant even experienced mountaineers can suffer from it.  You must be aware of how you are adapting to the situation and listen to your own body.  Getting fit will certainly aid your ability to get to the top though it is sheer determination that will see you achieve it.  While many thousands do make it to the top the percentage of those who try is only about 60% and an average of 10 people die up there every year in their attempt, unfortunately it happened on the day we summated, a man of 43 died at Stella Point.

I summated Kilimanjaro (19,351 feet) at 08.30 on 7th October 2005.

Sue Sims