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
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