Jordan recently celebrated his 16th birthday – thanks to all who sent cards and presents!

A teacher called Cindy from Chile and her students found Jordan on the web page when they were researching Proteus syndrome. The class started emailing us as they were very interested in Jordan’s story. Stranger still was that there were coming to the UK, and staying just 7 miles away in Hastings!

Cindy came to visit Jordan with two of her students, bringing letters, photos and gifts from the pupils back home. They continue to take an interest in Jordan’s progress. Thank you to our new friends in Chile!

Jordan and I were delighted to visit Joel, Lisa and Julian in hospital.

We drove up after Jordan finished his first lot of rehab and stayed in a premier inn hotel only a short walk from the hospital. Jordan and Joel played in the hospital play room, played pool, karaoke and computer games too.

We went to dinner with Lisa in the evening whilst dad Julian sat with Joel. We went shopping with them on the Saturday and had coffee and donuts too, a trip to the Bear factory completed our expedition and good fun was had by all. Joel is a real little character and likes to play tricks on the doctors and nurses, like his Sponge Bob door bell that’s squirts out water!

Dear family and friends

This is a quick note to say a BIG THANK YOU to you all – for your messages, phone calls, texts, visits, prayers, cards and pressies for Jordan.

Your kindness and support has made the last few weeks more bearable – from the time when we were first contemplating Jordan’s surgery, to the day he had the operation, his worrying time in intensive care and throughout his rehab programme.

Jordan had his surgery on 7th September and was discharged from RNOH on 22nd October, in time for his brothers 10th birthday the next day.  He had just 4 weeks of rehab, during which time he progressed from standing on his prosthetic leg with lots of help, to finally using crutches.  Some days now he is managing to walk with just a stick and went back to school full time last week!  He even retook his English GCSE this week as he wasn’t happy with his B grade!  Anyway you can tell I am a proud mum!

I hope the tales of “Forest” have added some fun to your days too!

You can keep up to date with Jordan’s progress on his blog here at:

www.proteus-syndrome.org.uk

or on facebook

Jordan is seeing his surgeon on 16th December to talk about having his left leg amputated possibly Feb 2010

Thanks so much again, we really appreciate it and sorry if I have not replied personally to every message.

Love from Tracey, Dean, Jordan and Kai
xx

Bedtime Forest

Cool Forest

Cosy Forest

Captain Jack Forest “Aaargh!”

Lumberjack Forest

Skater boy Forest

To boldy go where no Forest has gone before

Jordan having fun with his newest friend ‘Forest’!

This is Forest

Hoody Forest

Sleepy Forest

Mummy Forest

Olympian Forest

Footy Forest

Bespectacled Forest

Forest & Friend

Forest in touch with his feminine side

Chicken, where?

Captain Jack Forest

Rock Star Forest

Sporty Forest

Rusky Forest

Madonna Forest

Alien Forest

DJ Forest

Forest trying to look intelligent reading the newspaper

Loadsa money Forest

Skater boy Forest

Forest riding an emu!

The official Forest fan club

a hug for Forest

Jordan will be admitted to the Royal National Orthopaedic Hospital (RNOH) on Sunday 6th September 2009 for surgery on Monday 7th September (afternoon).  The operation is to amputate Jordan’s right leg above the knee.  This is Jordan’s choice due to increased pain and decreased mobility.

The address (if anyone wishes to send cards or visit) is:

RNOH
FAO Jordan Whitewood-Neal
c/o Adolescent Unit
Brockley Hill
Stanmore
Middx
HA7 4LP

At our 2008 Family weekend, Jordan asked if he could say a few words. Jordan, on his own, wrote the speech below.  He received a standing ovation and quite few tears, especially from me (his proud mum).  I hope you too find this inspirational.

Tracey

Jordan Whitewood-Neal: Speech on my feelings about Proteus Syndrome.

Ladies and gentlemen I believe you all know me but for those who don’t I’m Jordan Whitewood-Neal and I’m kind of new to this so you’ll have to bare with me. Now I’m not here to tell a story or to give advice but to give some sort of direction. So as you all know Proteus  is an overgrowth syndrome which causes bone, organs and tissue to grow out of control, for some Proteus sufferers it is a problem a wall on the road to the future but for me and hopefully many more it has become a way of life and everything is considered no different to the way anyone else lives. So through my long 13 years I have come across many hurdles as well as probably many other Proteus sufferers, and some have been big some small but I can tell you this, every one of those hurdles I have conquered. I’ve wheeled my manual wheelchair in a mini-marathon of 2.5 kilometres, I’ve walked when the doctors have said I couldn’t, I’ve ran when the doctors have said it’s impossible and I’ve played football when the doctor’s have said my legs just wouldn’t take it. I defied everything they said and I went further I played golf, basketball, I swam and what ever I wanted to do, I did it. So as I said I play golf and it’s keeping me energetic and fit and I find it fun now proteus to me has never ever got in the way of my education I’m top in most of my classes and hopefully will be taking three GCSE’s early which are an end of year eleven tests in English, art and possibly L.C.T. I’m also now in year nine and am going to become a peer mentor to a selected student which I believe will be good for both me an the student I mentor especially if they are being bullied because I have experienced it myself. Now some of you might know this already but when I finish school I want to go to college, then university to study to be an architect. Now I dream and when I reach that dream, I’ve won, I might not have won every battle but I will definitely be able to say that I won the war.

Now Proteus Syndrome does not only affect the sufferer but also the family some closer, some wider, sometimes it affects the mum, dad, brother or sister but then sometimes it can affect cousins, uncles, aunties and grandparents as well but whatever happens you must never ever let Proteus split up those close to you, never give in, always keep going and keep your mind strong which leads me into a little story. Two boy’s once came up to me and very politely said “excuse me do you mind telling us what you have” and that was the breakthrough, I told them what I have and they were really nice and they are the people that I have loads of respect for, it made me realise that having Proteus is not a curse it’s just the way we are and we should not be judged on the shape of our body but what’s up here in our heads and what we fill it with and that’s how I want people to think.

Now I’d like to unfortunately turn to the sometimes hard but capable difficulties that Proteus brings me and these problems probably occur in many others. At least once in our childhood or maybe even past that stage all of us who suffer Proteus will be stared at, bullied and sometimes just go through a stage where we feel angry at everything and spend our time just wondering why me why not anyone else and I would know I’ve been through the stage myself. But luckily they’ll be a stage where you feel absolutely fantastic, you’ll feel energetic, you’ll feel happy, and you won’t even care if you have proteus and that feeling would continue for how ever long you want and I’m currently going through that phase I want to really focus on school, I want to go out with friends down town and just hang around like any old teenager should, I want to play golf, listen to music and just have a good time no matter what I have. And the happiest thing I can say is that sometimes I completely forget that I have Proteus even though subconsciously I know I do but to tell the truth who really cares and that is the message I want to get across that nothing should hold us back,  nothing should stop us from doing what we want and that nothings ever easy but what the fun in something if it’s not a challenge.

So thank you for listening I hope that everything I said gave each and every one of you some help and that you really believed in what I said.

BY JORDAN WHITEWOOD-NEAL 13TH SEPTEMBER 08

These pages are dedicated to all those kind people who still keep in contact and who continue to donate so generously.  Jordan’s documentary continues to be shown all over the world, more recently in America, Australia and Israel.

Special thanks

We cannot thank Ann Wilson (Amanda, the secretary’s mum!) enough for spending endless hours altering a pair of jeans for Jordan.  Jordan hadn’t worn jeans since he was a small child and was desperate to get some.  Now my sewing skills only just reach attaching a button so the jeans were totally out of my league.  Jordan loves the jeans!

Jordan’s Nan, Margaret Whitewood – for alterations to Jordan’s school uniform and for donating a further £93 from sale of hand made cards

New wheelchair

Jordan has some new wheels!  We wanted to get Jordan a more comfortable chair and one that could be used across rough terrain.  After some research on the Internet we came across a company called Fieldmaster.   We requested the demo DVD and literature and were so impressed that we asked for a home demonstration.  Jordan was hooked!  The gentleman from the company was very willing to make adaptations to the chair to meet Jordan’s needs, for example a tailored leg and footrest.  When we received the quote the cost was just short of £10,000 however the chair can be converted to a four-wheel drive to go over woods, mud, snow and even the beach!  We were extremely lucky to receive all the money needed from a charity called REACT.  Jordan loves his new wheelchair and we now have an adapted vehicle to take it in thanks to Motability and a porch to store it in thanks to PSF UK!

Jordan’s spine and legs

In the last newsletter I told you that Jordan was going to be admitted for tests under the case of a UK surgeon, Mr David Harrison at Royal National Orthopaedic Hospital (RNOH) in Stanmore.  This took place in May 2008 but in order to move forward the RNOH required two more tests, an MRI and a laryngoscopy.  The MRI was attempted with Jordan awake but he could not lie still for long enough and so an MRI under GA was arranged.  The MRI broke on the day and we had to wait for another appointment.  In the meantime, Jordan was admitted to the Royal Alexandra in Brighton for his laryngoscopy.  The anaesthetist would not put Jordan to sleep as it was too high risk and referred back to RNOH. In essence what they seem to be saying now, is that for any surgery, Jordan would need to have a tracheotomy done.   In the meantime the second MRI was booked and about an hour before we were due to leave another anaesthetist rang from that hospital to say she would not put Jordan to sleep either!  This sounds like a very bizarre tale but it gets worse because just as all this happened Mr Harrison went off requiring some minor surgery himself!  The registrar that we saw during the 3 days in May has now moved to another hospital and no one seems to know when Mr Harrison is coming back!! So basically another whole year has gone past and no progress at all.  What I forget to tell you was that in the middle of all this, Shriner’s hospital sent over all Jordan’s X-rays, MRI, CT scan results etc by FEDEX.  FEDEX lost the whole lot and the package was searched for and never found!  They would not even consider compensation for the impact on Jordan and the need for him to have further tests.

Well you really couldn’t make this up if you tried!  I am still trying to find out when Mr Harrison is returning to work.  We have to make a decision about how long we wait for him to return, otherwise its off to locate yet another spinal surgeon!

Jordan’s legs really are hurting him now and he cannot walk more than a few steps.  He doesn’t seem in any hurry to make a decision about his legs for now and I have to respect that.

Golf

Jordan’s most recent hobby is golf!  Demelza hospice took Jordan for some lessons with an Ex Pro one Sunday.  Jordan has his own set of clubs now too.

Holiday in Cyprus

Thank you so much to the following people who made this very special holiday possible:

Steve Hiller
Arthur and Margaret Dunham
Mary Collier and Joanne Queenin
Parkfield Archers
Margaret (Peg) Whitewood

We had a two-week holiday in the sun in a villa with its own pool.  It was glorious and we had such a great time.  It took some organising, as we had to get Jordan a business class seat, we had to fly to a different airport because of this.  We couldn’t take the electric wheelchair as I couldn’t find a car hire company with wheelchair accessible vehicles (only by the day with a driver) and we had to limit our luggage, as we had to fit all of us and the manual wheelchair in to a Vauxhall Zafira! Sardines comes to mind especially when Jordan takes up the entire backseat with his long and unbending legs!

Award for achievement at Bexhill High School

Jordan is doing really well at school and was recently presented with an award

He is starting a couple of GCSEs early and is currently interested in a career in architecture.

Camping

We took the boys camping in the summer.  Dean decided to buy a large tent that enables Jordan to stand up right (as he can’t go on all fours).  Well there’s big and BIG!  Dean bought a ten-man tent that said it needed only two adults to put it up.  What they didn’t account for is quite a windy day and two impatient boys!  Some fellow campers took pity on us and eventually the tent was up. The boys really enjoyed it and we hope to get some family and friends to join us next time.

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