University of Creative arts in Canterbury

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jordanuniJordan has recently started his second year at the University of Creative arts in Canterbury.  He has an adapted flat on campus and he is right near to the city centre. He has made some amazing friends and loves the architecture course which is tough and full on!  He has visited Barcelona and Paris and next year they are going to Munich.  Jordan drives his own ‘drive from wheelchair’ vehicle. Jordan gets help every day with his cleaning and cooking but other than that I am so proud of what an independent and determined young man he is. He has fought through all his battles and is still an inspiration to so many.

Measured By The Soul – book about Joseph Merrick

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Joseph Merrick, the Elephant Man, was a 19th century Englishman who suffered disfigurement from an extremely rare disorder, which is believed to be Proteus Syndrome. Though his physical and mental suffering was great, he remained courageous. ‘Measured by the Soul,’ is lavishly illustrated with never-seen-before photographs of Joseph’s life and Victorian times. This book also features interviews with modern patients who live with Proteus Syndrome (including Jordan and Tracey), as well as exciting news from Dr. Leslie Biesecker of the National Institute of Health in Bethesda, Maryland. Thanks to Dr. Biesecker’s research, there is hope for new treatment of Proteus Syndrome and its ultimate cure.

Proceeds from this book will benefit Proteus Syndrome treatment and research. US$13.99 / £8.47

For more information and to purchase your copy please visit:

www.lulu.com

 

Update 2012

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Jordan and the research programme at National Institutes of health (NIH)

I took Jordan for his review in October 2010. We stayed at the Children’s Inn on the NIH campus and as usual all our costs were met by the NIH.  Our main concerns were the progression of Jordan’s spinal deformities and his low platelet count.  A blood test was done to inform our consultation with the haematologist and we went on our way, having appointments with rehabilitation consultants, occupational therapists etc.  After a trip to the Children’s national medical centre in Washington we were called in to the clinical department as they had found a high D Dimer reading in Jordan’s blood test. The d-Dimer blood test measures one of the breakdown products of a blood clot.  Due to the high incidence of pulmonary embolisms in patients with Proteus syndrome, Jordan was booked in urgently to have a CT scan and straight after to have ultrasound of his legs to see if he had a clot.  I was called to the desk of radiology and was told by the doctor that they had found two clots in Jordan’s lungs and because these can be fatal, Jordan had to be admitted to Intensive care immediately.  Jordan was totally freaked out and so was I.  Jordan was monitored and all his vital signs were normal, he did not even have any symptoms!  He was started immediately on heparin injections.  Due to an infection in the hospital we were subject to strict infection control – this meant new paper gown and gloves every time I went in or out of Jordan’s room, swabs to check Jordan and no visitors!  Kim, Barbara and Mary from the American PSF were “in town” but could not visit!

Jordan and I were very worried but knew we were in safe hands but Jordan was also upset that the USA Family conference was starting and we did not think we could make it. Les and Julie knew that this meant a lot to Jordan so they came up with a plan to start Jordan on warfarin tablets for his journey home and to allow him to leave ITU as soon as possible.  We had an evening “pass” from the hospital to attend the welcome reception and Jordan was discharged in time to attend most of the conference.  The doctors never found the source of the clots in the lungs.

 

Childrens Inn – NIH campus

Jordan and I didn’t get to spend too much time at the Children’s Inn this time as we were not allowed to go back once Jordan had been in ITU due to the risk of spreading germs especially to the cancer patients whose immune systems were comprised. However every time I go back to the Childrens Inn, it seems to get better each time with new facilities. Our room looked out in to the beautiful grounds with wild deer, we had French doors opening out on to a little patio too. I hope these photos get across what a wonderful place it is.

 

PROTEUS FAMILY AND MEDICAL CONFERENCE 2011

Given the amazing news that the genetic cause of Proteus had been discovered, this was a very important and poignant conference. There was so much for families to take in, there was emotion, excitement, sadness about those we had lost and also hope.  It was a packed schedule starting with a family meet and greet on Thursday 6th October.  The conference started Friday 7th October with a talk by Leslie Biesecker named “The molecular basis of Proteus syndrome”.  Julie Sapp followed with her talk entitled “Momentum: Research partnerships and psychosocial challenges of Proteus syndrome”.

The last presentation of the morning was by Chris Gracey a gentleman who is trying to help people with Proteus syndrome with their shoe problems or “Pedorthic solutions for persons with Proteus syndrome: Phun with Pheet!”

The afternoon covered “Managing skin changes in Proteus syndrome” by Thomas Darling and “Educated patient healthcare and advocacy” by Catherine Blumhorst.  There were also break out sessions in the afternoon where families could discuss issues with all these medical professionals in small groups.  Dr Michael Cohen also joined the sessions to share his wealth of knowledge.

On Saturday 8th October we were very lucky to hear from Cooper Hoag (brother of the late Alex Hoag), Brian Richards, Abby Grealis and Jordan.  They wanted to get up and say a few words about what the BIG NEWS meant to them and wanted to personally thank Les Biesecker and his team for dedicating years to finding the cause of Proteus syndrome.

Barbara Biesecker spoke about “Redirecting our narratives – coping with Proteus syndrome”.  Laura Tosi talked about the Orthopaedic workshop recommendations then there were question and answer sessions in the afternoon followed by further break out sessions.

It was great to meet up with everyone again and Jordan and I had a really time.

 

Holiday time

Dean, Jordan, Kai and I were very lucky to visit my family in Australia in December.  We had not been for 5 years and I had a niece and nephew that I had never seen!  The journey was still difficult for Jordan, despite having no legs to worry about!  The seats are not very comfy and his back really hurt, the longest flight was over 13 hours long!

Dean and I were treated to a city escape to Melbourne by my mum which was wonderful and the weather glorious

The whole family went away for 3 nights to Lake entrance and Kai got the lad hooked on Uno!  Kai enjoyed the swimming pool there but we weren’t too keen on the huge huntsman (spider) that was on the wall one morning!

Dean, Kai and I enjoyed a lovely break by the sea in my mum friends beach house in Blairgowrie – my sister treated us to a day at the natural hot springs which was just fantastic!

Best of all though was spending time with family , my mum and sisters and brother in laws and  Alex and Elliot, cousins for Jordan and Kai.

 

Jordan wants to learn to drive!

We decided to use the same driving assessment centre as Ross in Surrey. The conclusion was that Jordan should be able to drive as long as Motability will pay for the adaptations needed. We have sent off for his provisional licence then the next stage is to apply to Motability for funding.  Jordan seemed to enjoy getting behind the wheel of a car!

Happy 16th Birthday Jordan

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

Visitors all the way from Chile!

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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 visits Joel in hospital

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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!

Thank you all!

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mumscamera-017Dear 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

The adventures of Forest continues…

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Bedtime Forest

forestnew-032

Cool Forest

forestnew-031

Cosy Forest

forestnew-038

Captain Jack Forest “Aaargh!”

forestnew-039

Lumberjack Forest

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Skater boy Forest

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To boldy go where no Forest has gone before

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The adventures of Forest

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Jordan having fun with his newest friend ‘Forest’!

This is Forest

This-is-Forest

Hoody Forest

Hoody-Forest

Sleepy Forest

Sleepy-Forest

Mummy Forest

Mummy-Forest

Olympian Forest

Olympian-Forest

Footy Forest

Footy-Forest

Bespectacled Forest

Bespectacled-Forest

Forest & Friend

Forest-&-Friend

Forest in touch with his feminine side

Forest-in-touch-with-his-feminine-side

Chicken, where?

Chicken,-where-

Captain Jack Forest

Captain-Jack-Forest

Rock Star Forest

Rock-Star-Forest

Sporty Forest

Sporty-Forest

Rusky Forest

Rusky-Forest

Madonna Forest

Madonna-Forest

Alien Forest

Alien-Forest

DJ Forest

DJ-Forest

Forest trying to look intelligent reading the newspaper

Forest-trying-to-look-intelligent-reading-the-newspaper

Loadsa money Forest

Loadsa-money-Forest

Skater boy Forest

Skater-boy-Forest

Forest riding an emu!

Forest-riding-an-emu!

The official Forest fan club

the-official-Forest-fan-club

a hug for Forest

a-hug-for-Forest

Operation is set for 7th September

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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



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