Fundraising update

Fund Raising update 1 Comment »

Companies and Groups

ING Wholesale bank

How strange are fate and chance encounters? We met Sue Maynard (vice president service management at ING) at our last Family weekend. Sue and her friends were very touched by seeing the children so clearly affected by Proteus syndrome, but nonetheless enjoying life to the full!

Employees of ING raised an amazing £7664.23 by running the London Marathon in 2007. Our PSF Treasurer Paul Collins went to collect the cheque. Here is what he had to say:

“Hi Tracey,

Forgot to tell you who is who in the photos. Lady on my right, in white, is Sue Maynard, promoting PSF to her colleagues at ING bank. The lady on my left in predominately orange, is Kim Jennings, who a runner with the ING London Marathon team and the sponsor for PSF UK as a participating charity in the ING fund raising effort. Apparently ING hold other events, such as a quiz night and pitch and putt (in their offices) that build up collecting funds that culminate in the London marathon.

Paul”

CJ Coleman & Co

Raised money in lieu of Christmas cards

Lloyds charitable trust

Again thanks to Paul Collins (dad to Ross Collins) for collecting the cheque for £1000 on our behalf. Our heartfelt thanks to Nik Gooding and Lloyds.

Genesis technical recruitment

Donation of £100

Smith Child Lodge

Donation of £100

Bexhill High school

The learning support team raised funds in honour of Jordan by making Christmas cards and by a raffle at their musical show.

Claimar Care Ltd

Donation by an employee of £20

OPM

Our thanks to Dave Stannard and OPM for their donation of £200

Fundraising events

Roger FinchRoger finch – sponsored Triathlon

Our heartfelt thanks to Roger who raised an amazing £479.77 through his energetic efforts!

Rachel Davis – musical showcase

This event raised £575 with the help of Mandy Sellars

Rachel, who is a freelance music tutor wrote:

“Dear Tracey

Please find enclosed a cheque for £575, the result of a fundraising event organised by myself and my students with the help of Mandy Sellars, a friend of mine whom I believe you know. We hosted a musical showcase evening in which 27 students took part. The money raised came from ticket sales, programme sales, a raffle and a quiz. Mandy also wrote an informative piece for the programme and distributed flyers, as we wanted to raise awareness as well as funds. The audience response was extremely positive and I hope you will agree the event was a success, kind regards Rachel”

St Louis Catholic Primary school

The school put on a Christmas concert in honour of Dillon Chapman and raised £320.78. I received a lovely card from Dawn, Dilllon’s mum:

“Dear Tracey

A big hello to all and Happy New Year. Please find enclosed a cheque for £320.78 raised at Dillon’s Xmas concert for school. They did a 10am and 6am concert with a collection at the end and nominated “Proteus” to receive the money. We were thrilled.”

Many thanks to Mr Triggs the headmaster and all involved.

Mrs M Whitewood (Jordan’s nan) and Joanne Luck (Jordan’s auntie)

Further sales of homemade cards brought in another £93 for the PSF UK, that’s over £300 to date or around 1200 cards!

Keyline Brands

Grateful thanks to Sarah Selwood and her company, Keyline for sponsoring this year’s charity ball. Their £250 donation sponsored one of the events evening auction prizes, a Mud and Mayhem voucher for four people by Adventure Sports.

SWEET SUCCESS – Claire Raynor (Tracey’s sister from Australia)

I had not entered the fundraising arena before so went for something easy – selling chocolate! When I first picked up the 12 boxes of freddo frogs, caramelo koalas and various others; I did wonder if I was going to be 15 stone before long, however, they sold really well. Tips for selling chocolates; wait until approximately 4pm and send an email out telling everyone you have chocolates on your desk (evil, but effective). I also had help from family and friends; although they did enquire as to whether if I was going to help them out by buying them a subscription to weight watchers, I think not. Total funds raised were £300.00.

Local (Essex) fundraising report by Geoffrey Child

I have in the past written about events, organised here in Benfleet, Essex, that have been very pleasant for all to arrange and beneficial for this worthy PSF UK charity.

This is another brief account of more recent events that have not only increased the general awareness of the PS condition, but also raised us some additional funds.

***************************************************************

A Black Tie Ball was arranged in July 2007. The Hertfordshire venue was a lovely marquee, pitched in the grounds of a delightfully converted mill, on the edge of the river. Hotel accommodation was made available to many guests.

The weather was kind, and the champagne reception, held outdoors with bagpipe music, was lovely.

A great meal was then served, followed by an auction of items mainly donated by PSF friends.

The evening was completed with live music and dancing. A great evening was had by all, plus the fact money was paid to our charity. A great bonus!

Some pictures, taken that night, are now shown.

Paul and Donna Collins (parents to Ross) also attended the event:

“Hello Tracey,

We thought we would update you with our night out last night at the Summer Ball arranged by Nick Elmes & Jo Brewster, in aid of PSF UK. We had thought that this event would be shared 50/50 with another Charity, but we learned last night that Nick had moved it over to being totally in aid of PSF UK. A full black tie event, held in a beautiful marquee next to the River Stort, on the Essex side of the River (the other side being Hertfordshire). There was a Raffle; Auction (which included a Micro lite flight with the Proprietor of the Hotel) which they hope will raise a tidy sum. The party went onto 5am this morning, (we lasted until 2am) and the expectation is that over £1,000 will have been raised.

We are feeling a bit tired a the moment, but happy,

With lots of love,
Paul, Donna, Jamie, Ross & Scott”

• The Benfleet Methodist Wives Club continues to support “the children”.

Our godson, Ross Collins, lives in a nearby area and does attend some of their fund raising events. They also hear a great deal of news regarding Jordan. I believe that knowing people that benefit directly from fund raising is so meaningful and gives so much enthusiasm to these lovely ladies.

In November 2007 I visited the club again, and was proud to hand them a framed certificate confirming their fund raising, for a second year. It is quite amazing the different ways they manage to find to raise funds. They make items, including greeting cards, run white elephant stalls, hold coffee mornings and find many unusual ways of having sponsored challenges.

Thank you ladies. You are all so very kind.

• A Charity Christmas card! What about it I thought? Is this a first for us?

For good market coverage, both picture and greeting had to be carefully selected. Competition is great. Charity cards are very good and popular now.

I decided to paint our picture and have the original printed. A friend managed to persuade a client of his to print the card without charge. The friend supplied envelopes and packaging and I printed the sales flysheet. A good combined effort. Good friends are great to have! The cards were ready by September.
The end product was ten cards in a pack, all showing the PSF logo, registration details and confirming the charity would receive 100% of all money paid.

The result was we gave PSF £1,175. Not bad for a first, was it?

Two photographs of both the painting and finished card are shown for interest
*************************************************************

THE 2008 CHARITY BALL

BIRMINGHAM OPENS ITS HEART TO PSF!

On March 8th 2008 Birmingham took to its heart PSF UK and demonstrated its kindness and overwhelming generosity to Joel Hales-Waller and the Charity. Two special people, Julie Laight and Claire Hales professionally organised a “Night of Laughter” Charity Ball which was held at the ICC in the centre of Birmingham. Over two hundred people attended a lavish celebration of Joel and the other children in PSF. The Ball was compared by T.V’s Central Newsreader, Llewela Bailey and auctioneer Rory Daly. The Ball successfully raised for Joel and PSF UK a sum in excess of £23,000. The evening was opened by Geoffrey Child, PSF’s auditor, who detailed the history of PSF and how it has grown to help many people in supporting them with mobility and medical equipment and advice over the last 10 years. Then Lisa Hales, Joels’ mother, gave a heart felt and emotional insight as to how Joel and his family cope with his disabilities and what it means to them in having a child with these extreme difficulties. The reception she received from all present was one of admiration and was well deserved. Before the meal started, guests were invited, for a price, to take part in the Knife, Fork and Spoon game. This entailed all guests standing and holding up their Knife, Fork or Spoon in response to answering a three part multiple questions. If you answered wrongly, you sat down, and the winner of two hundred pounds was the last person standing, who answered all the questions correctly. During the sumptuous meal, funds were raised by an auction which included items such as signed pictures and memorabilia of the Red Arrows, Lewis Hamilton, David Beckham and Christiano Ronaldo. There were other wonderful gifts given up for auction, such as a tour of the House of Commons, expensive meals, team building day, a signed self portrait by John Hurt and two top class air flight tickets to New York. After the auction a spectacular raffle was held with prizes ranging from football tickets, signed copies of a Jeffrey Archer and Trinny & Susannah books and a Bill Bailey T shirt and CD. But the top prize was a wonderful 18ct yellow and white gold diamond necklet which was valued in excess of a £1,000. The night of laughter evening was overseen by a troupe of performers dressed as apes who ensured no one could take the evening too seriously. The apes were very clever and demonstrated drumming skills to match Phil Collins and singing prowess that matched Pavrotti! A magician also spent time with every table with how to do magic by Paul Daniels, which was very funny. The fund raising was finished by an auction for 10 beautiful large Teddy Bears, who were all given good homes. To complete the evening, an excellent live band started to play, which lead the guests into dancing up to the early hours of the following Sunday morning.

This report is brought by the PSF treasurer Paul Collins aka Groucho Marx, but that’s another story!

The evening included an auction of the following “lots”:

Lot 1: One hour’s cricket coaching with Michael Powell & Dougie Brown
Lot 2: Signed Red Arrows picture
Lot 3: Mud & Mayhem Driving Experience for Four Supported by Keyline
Lot 4: Tours of the House of Commons & Big Ben plus lunch & first class rail travel
Lot 5: Cristiano Ronaldo Signed Boot Presentation
Lot 6: Coutts Dining Room Experience for Six Supported by Coutts & Co.
Lot 7: Team Building Day for 10 Supported by More than Bricks and Mortar Ltd
Lot 8: Lewis Hamilton Signed Cap & Photo Presentation Supported by Deloittes
Lot 9: Dinner for two at Simpsons and Bentley Factory Tour
Supported by Bentley Birmingham
Lot 10: Signed Self Portrait of John Hurt Donated by John Hurt CBE

The PSF UK would like to thank:

Autoglass ■ Bigwood Chartered Surveyors ■ Ceasers ■ Claimar Care plc ■ Enigma Fire Systems Ltd ■ Ernst & Young and RBS ■ Harvey Ingram ■ Hammonds ■ Higgs and Sons ■ Life ■ Lodders ■ Mazars ■ Pinsent Masons ■ Pointon York SIPP Solutions ■ Rudell The Jewellers ■ Sk:n ■ Ward Lovett ■ Wragge & Co. Adventure Sports ■ Jeffrey Archer MBE ■ AMD ■ Bill Bailey ■ Llewela Bailey ■ Birmingham City Football Club ■ Birmingham Hippodrome ■ Bentley Birmingham ■ Brophy Riaz and Partners ■ Dougie Brown and Michael Powell ■ Coutts & Co. ■ Rory Daly ■ Deloittes ■ Ebitda Limited ■ Ethos ■ John Hurt CBE ■ JE Consulting ■ Keyline ■ MTBM ■ Marcus Galleries ■ Number nine the gallery ■ Andy Parker ■ Raddisson SAS Hotel Birmingham ■ Red Arrows ■ Rudell the Jewellers ■ Simpsons ■ Sion Simon MP ■ Sk:n ■ Trinny and Susannah ■ Virgin Rail ■ Waitrose

Andy and Maggie at AMD Print Ltd – for the charity pop ups that they have so generously donated.

Calling all companies!

If you would like to be involved in the Charity Ball 2009, either in advertising or in sponsorship, please contact Tracey Whitewood-Neal on tracy.whitewood_neal@virgin.net or Julie Laight on julie.laight@btinternet.com

Jordan update

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Jordan’s trip to America in 2007

We travelled to Washington USA with Max Jet (business class only seats) in September 2007 for Jordan to have his follow up visit as part of the Research programme. Sadly the airline (which was a much cheaper option than others for business class seats) has now been made bankrupt so I am not sure if we will be able to travel to the USA with Jordan any longer. The cost of business class seats (which is now essential for Jordan as he cannot bend his legs enough to sit in economy class) is prohibitive and approaches to airlines to show compassion and reduce their fares, in the main have been fruitless.

The first Proteus syndrome skeletal biology workshop

The other reason for the trip was for Jordan to be a case study for the workshop on Proteus syndrome. Among the experts at the Proteus syndrome Skeletal Biology Workshop were:

Leslie Biesecker – National Institutes of Health (NIH), Bethesda, Maryland (leads the research programme for Proteus syndrome)
Laura Tosi – Orthopaedic Surgery and Sports Medicine, Children’s National Medical Center, Washington
Michael Cohen – Dalhousie University (discovered Proteus syndrome)
Regis O’Keefe – Department of orthopaedics, Center for musculoskeletal research
Ben Alman – Dysregulation of cartilage in tumours
James Aronson – Limb lengthening, Arkansa Children’s hospital
Tracy Ballock – Department of Orthopaedic surgery, Cleveland Clinic Foundation
Randal Betz and Amer Samdani – Spinal cord injury unit, Shriner’s hospital Philadelphia
Peter Choyke – National Cancer Institute, NIH
Michael T Collins – NIH Dental and Craniofacial research
Benoit de Crombrugghe – Department of Molecular Genetics
Eli Hatchwell – SUNY at Stony Brook
Brendan Lee – Department of Molecular and Human genetics
Gayle Lister – National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH
David Ornitz – Department of Molecular Biology and Pharmacology
Francesco Ramirez – Hospital for Special Surgery, New York
Pamela Robey – National Institute of Dental and Craniofacial Research
Vicki Rosen – Harvard School of Dental Medicine, Boston
Rocky Tuan – National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH
Matthew Warman – Biomedical Research, Cleveland
Yinggzi Yang – National Human Genome Research Institute, NIH

The event was co sponsored by the National Human Genome Research Institute, the Office of Rare Diseases, the Society for Bone and Mineral Research and the Proteus Syndrome Foundation

Representatives from the PSF attended with me as the representative from the PSF UK. I recently received an email from Dr Leslie Biescker explaining that they are working on a draft manuscript (to be published in the medical literature) summarising the clinical recommendations for surveillance and treatments for PS that workshop participants developed over the course of the conference. Another manuscript summarising research recommendations is planned. There certainly were some amazing “minds” in the room who brought an energy and enthusiasm to help find ways to tackle Proteus syndrome. Many ideas were exchanged about different techniques to study tissue that the NIH obtain from people with PS to better understand the basic biology of this condition.

During the two days we were very lucky to meet Dr Randal Betz and Dr Amer Samdani from the Shriner’s Hospital in Philadelphia. They took a look at Jordan and felt they could help him both with his legs and his spine. We made a decision to travel to Philadelphia where Jordan had another week of appointments and tests. We received their report a while after we returned home and basically they are recommending spinal fusion for Jordan (his scoliosis is getting progressively worse) and part amputation, false knee joints and prosthetic lower limbs. They are aware of the high risk of deep vein thrombosis (and pulmonary embolism) especially following spinal surgery and intend using an IVC filter which acts as an umbrella to catch any clots which may form. This prevents the clots passing to the lungs which can result in death.

Jordan’s lung function tests in USA show some decline since 2004 so we saw a pulmonary doctor in Brighton recently. He believes the results are more indicative of an obstruction in Jordan’s airway so we are awaiting an appointment for that to be investigated.

We have an impossible decision to make. The risk of Jordan having spinal surgery is high and yet without the surgery his spine is very likely to continue to deform causing pain, immobility and possibly effects on his lungs. There is no doubt that his spine is getting worse each year. We have recently seen a new spinal surgeon in the UK and he wants to take Jordan in for a few days to basically repeat what was done at Shriner’s. We then hope to get a second opinion from him. I wish we knew what to do for the best. We are not even giving much thought to his legs at the moment, they can wait until later. I have very confidence in the ability of the team at Shriners and they say that given 6 months they could pretty much straighten Jordan out and give him a good pair of prosthetic legs. I just wish they were in the UK and I wish they could guarantee that Jordan would pull through the spinal surgery. No one can give that so we have to hope that we make the right decision at the right time. Thank you to our friends and family for their support and comfort. Thanks to my mum who has offered to accompany us to Shriner’s and to my sister Claire for spending time with us as a family to help and support us when we need it most. Thanks also to all those that have provided support and advice from a distance especially to Mary and Joanne.

Fundraising for Jordan

We are so very fortunate that people continue to support Jordan. Thank you to everyone who continues to send donations and presents to Jordan and Kai, as well as words of support and comfort to me.

Real life Robin Hoods!

Margaret Dunham sent Jordan £100. Margaret and Arthur’s woods in Cambridgeshire, were used by the Parkfield Archers of Wimblington to hold a winter shoot. A real family sport, visitors took part in two rounds of archery and Margaret Dunham presented the winners with gold, silver and bronze medals for their performance in the different categories.” Many thanks to John Claydon and his archers!

Margaret has also sent Jordan another £80 raised by doing talks for various groups. We hope that Arthur (aka Grandad) had a fantastic 80th birthday!

Special Thank you’s

A lovely lady called Doreen who lives near Amanda (the PSF UK secretary) has been knitting Jordan some socks. We cannot begin to thank you enough. Having socks that fit is something most of us take for granted. We have to get Jordan’s socks from America but even those are getting a bit too tight now so having Doreen’s “made to fit” socks is just brilliant. THANK YOU!

Jordan’s many “fans” have continued to be so generous. Thank you for sending Jordan both Christmas and birthday gifts. Jordan was able to buy a WII machine with his brother Kai. Special thanks to Lisa from Sweden for the Halo 3 game and to Jamie and Fiona Hetherington for the donation from their wedding gifts

Thanks to Amanda and Mark for having Jordan and Kai in the summer allowing me to travel to Scotland with my mum who was over from Australia

Thanks to James Bystrom who flew to Bethesda to see Jordan! We had fun playing pool and going on a shopping trip, thanks James for always being there

Thanks to all those that continue to send emails and cards from all over and those that phone just to see how we are!

Shiatsu helps Jordan’s back

We were very lucky to stumble across a fantastic man called Martin Sayers. Martin practices Shiatsu described in his leaflet “Shiatsu is a form of acupressure bodywork developed in Japan. Treatment is deeply relaxing and revitalising and can help a wide range of conditions from specific injuries to more general symptoms of poor health. Shiatsu encourages the free flow of Ki (or Chi) throughout the body, balancing the meridians and acupoints, using thumb and palm pressure, gentle stretches, joint rotations and postural alignment.

Most cultures have a name for the energy that animates life be it Ki, Chi, Prana, Bio electricity or life force. Now widely recognised in the West, therapists in the East have understood for centuries that Ki flows throughout the body in a series of channels called meridians. For many different reasons, Ki can stop flowing freely, creating symptoms of stress and disease.

Oriental medicine treats the whole person improving energy flow and restoring balance and harmony to the body, mind and spirit. Shiatsu is a complementary therapy which can be used with confidence alongside conventional medicine.

Common conditions helped by Shiatsu include back pain, headaches and migraines, neck stiffness and whiplash injuries, joint pain and reduced mobility, menstrual problems, digestive problems, asthmatic symptoms, sports injuries and depression”

Jordan is having a treatment each week and this has helped so much with his back pain. The last couple of times have meant that Jordan is practically pain free for the whole week. I also do a little massage on his back and neck each night. I have also indulged myself which helps as I can get very stressed with everything. Your donations and fundraising are making this possible.

We hope to embark on Tai Chi Qigong next which Martin teaches – more next time!

Jordan and his hobbies!

Jordan was invited fishing by Cameron last year and he quite took to it as the photos show! He hopes to get back to fishing this year once it gets a bit warmer. Your donations allowed Jordan to buy his first rod and fishing tackle

New pets!

After the sad death of Presto the bearded dragon we finally caved in and let Jordan buy two pet rats! They are sisters called Honey and Fudge – Jordan is able to handle them and they get tame quite quickly

Jordan enjoys life

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Myself, Jordan and his brother Kai have started martial arts one night a week! The instructor lets Jordan do what he can in his wheelchair and has gained permission to “grade” Jordan for his Yellow belt. Jordan grades on 8 October!

Since the documentary support has poured in for Jordan and invites to days out. He was the mascot for the Hastings United Football Club, where they won 4 – nil. Jordan received a signed kit, football and season ticket.

Jordan was also invited to watch Sussex County Cricket team where that won against Yorkshire. They presented Jordan with two bats signed by all the players.

Jordan was taken out by Cherished memories to Silverstone by limousine! Him and his brother Kai had a great day out.

They met the Jordan and BMW teams and watched the cars being prepared and tested. They also went round the track in a pace car.

Jordan visited Chelsea last December as part of winning a Children of Courage award – you can read about his time in the USA newsletter but this is what Jordan wrote:

“Now I want to tell you about Chelsea and when I went up there. It was a wish of mine to go up and see the squad and Frank Lampard. It was the best day ever, I saw a match, Chelsea won 4-0, I also got a scarf, signed shirt and my wish”.

Jordan was featured in a Chelsea match programme and his shirt and photo have pride of place on his bedroom wall.

After the documentary a lady called Lisa and her boss Guy (both from UBS Investment Bank) arranged a day out for Jordan to watch Chelsea again. Jordan’s uncle Chris (also a Chelsea supporter) went with him, a chauffeur car picked them up and a good time was had by all!

UBS have launched an appeal for the PSF UK on their internal Intranet site.

A local lady called Sue is climbing Kilamanjaro raising money for Jordan, she is going to place a special Jordan/PSF lag at the top!

Research programme

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Jordan visited the Research Programme in USA for the third time last October. They recommended stapling of the knees to try and get his legs straighter, previous more radical surgeries had not worked.

Here is what Jordan wrote about his operations:

“Hello I am Jordan and I am going to tell you about the three operations that I have had in the last three months. The first one was to have staples put in my legs in my knees which was to hopefully stop them bending the wrong way. But after about 4 weeks they came out. So I had another operation to put them back in. The second operation was the worst, so much pain. But once again after 5 weeks this time they came out again. This time the pain after, was, well, there was no pain until I started to walk again it stung. The worst thing though was that I could not play football. But now after 4 months I am playing again. YEEAHH!”

During this time Jordan had a chest infection followed by a vein infection.

Television documentary

Jordans Blog 6 Comments »

Jordan appeared on a Channel Four Documentary “The Boy with Proteus syndrome” on Monday 22 August 2005. Since then Jordan has attracted quite a fan club! People have been extremely generous, sending Jordan money for his fund and presents ranging from Yu Gi Oh cards, signed David Beckham boots, music CDs and sweets, to heat pads for his knees. We truly appreciate and welcome this kindness, generosity and support. You know who you are, Thank you!

Previous fundraising

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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



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