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:
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
November 26th, 2009 at 1:04 pm
good job jordan!I am very proud of you! vest wishes:)
November 26th, 2009 at 1:06 pm
Hi, my name is Randy and i live in Chile. I like your blog. Keep it up!
November 26th, 2009 at 1:09 pm
I hope you have good luck in your operation in february
November 26th, 2009 at 1:14 pm
Hi Jordan
How are you? I´m from Chile, I lived near the sea in a beatiful city, I know your illness
Answer me
Bye
November 26th, 2009 at 1:24 pm
Hi everyone and specially you Jordan, I wish you good luck in the operation, I’m sure everything is going to be OK.
Bye!
December 11th, 2009 at 11:43 am
Great to catch up with what’s going on with Jordan.
As ever, great to see his beaming face and sense of fun shining out! His rehabilitation is, as ever, remarkable.
I am in a real rush but will be back very soon for regular updates.
Good luck with everything!
Ben
January 4th, 2010 at 7:45 am
You are loud and proud and I am humbled. Thank you for sharing your story.Sometimes I look at individuals with challenges and I think “why them and not me?” I believe that I wouldn’t have the right stuff with which to make a positive impact. But you do. You have the right stuff and again, I feel humbled.
March 26th, 2010 at 11:41 am
The documentary called ‘boy in a million’ has just been shown in Australia and i felt compelled to check the internet to make sure Jordan was still doing well and still looking as beautiful and sunny as he did on the show. You truly have the face of an angel! I’m so happy that you are doing so well and i wish you all the luck with your rehab. You have a very special, wonderful Mum and I hope you both look after each other, Sally x
April 6th, 2010 at 9:59 am
Hi there Jordan,
Thank you for sharing your life with us. I have read your blog and so admire you and your spirit. I suffer with depression and have at times allowed it to overwhelm
my life and i feel ashamed knowing what you have to endure in your young life.
A friends Mother had Proteus Syndrome but that was back in the 1950′s when there was much ignorance about it and it mean’t a life of isolation for her at that time.
I feel we have much to learn from people like you Jordan.
I wish i was more like you.
Take care and every good wish for you and your family.
Sue
April 11th, 2010 at 12:52 am
hola jordan, soy de Mexico, y quiero decirte que te conoci a ti y a tu familia en la conferencia de las familias de proteux en el 2002. Asistimos con Andrea Marin, en pequeño llamado fernando y mi hijo juan guillermo.
Un abrazo muy fuerte y sabes el convivir con un niño especial en una gran bendicion, se que los trastornos son complicados pero, son personas muy lidas.
sabes en mexico nosotros haciamos nuestra pequeña reunion siempreen diciembre, y no la pasabamos muy bien .
Te deseo lo mejor, y mi admiracion a tu mama, porque ella tambien es alguien muy especial, un abrazo para ambos.
[google translation] jordan hi I’m from Mexico, and I want to tell you that I met you and your family in the conference proteux families in 2002. Andrea Marin assist in small and my son called fernando juan guillermo.
A big hug and you know the special child live with a great blessing is that the disorders are complicated, but people are very lidas.
mexico us know in our small meetings where December and not moved on very well.
All the best, and my admiration for your mom, because she is also someone very special, a hug for both.
April 13th, 2010 at 6:51 pm
Hi Jordan, I watched your documentary a few weeks ago now and was so touched by your strength and determination. After watching your story I was compelled to search the internet to check your progress and see how you were doing. I am glad to hear you are doing very well and I wish you all the best of luck for the future. Your are such a credit to your Mum and Dad and think that you are such an inspiration to everyone, you keep up your determination and you can achieve anything you want.
God bless & take care
Cathy-Ann
May 9th, 2010 at 12:50 am
Hi Jordan, Having just watched your documentary, I would just like to say what a brave and gorgeous young man you are and what a fantastic family you have. You are an inspiration to us all. I wish you the very best for the future.
Laura, London xxxx
July 22nd, 2010 at 4:24 am
Hi Jordan,
I am from Prague and my english is not so good unfortunately. I sew your documentary in Tv yesterday and i just want to tell you how beautiful, amazing boy with a good heart you are..! I wish you just the best to the future even to your family.
Big kiss, take care,
Lenka
August 10th, 2010 at 11:58 am
Hi Jordan & family. I’ve stumbled on your website by pure accident! I was looking at the photos on positive exposure because some people with my sons syndrome (smith magenis) are on there and I saw your photo, and had to look you up because I thought you were just a stunning looking lad (your eyes caught my eyes!!) I found this site, and more information about you, and you are an inspiration. You have what looks like a wonderful support around you, and I hope you are loving your new legs! All the very best for the future. Salli in the UK> x
October 21st, 2010 at 7:48 pm
Hi Jordan, I’m from Brazil and i have a pacient with proteus. His name is Caue and he has 15. I’m phisicotherapist and we work togheter for 8 years. We don´t have a foundaition here, so we want to talk with people who has the same problem!
I saw your history and the only thing to say is: You are a chanpion!!!!!!!!!!! Congratrulation
We realy want t keep contact, may we?
kisses from Brazil
November 23rd, 2010 at 1:22 am
Dear sweet Jordon. I am a registered nurse and mother to a 10yr old daughter. I watched a doc on Mandy Sellars, I am sure you are aware of her. I then looked up Proteus on the internet and found your story. Firstly I must say that you are a very handsome man.You ooze charisma and happy energy in all your snaps. Your family are amazingly dedicated to providing you with all that they can and this is remarkable. In a world which is plagued by appearances and superficiality I applaud your courage to lead as normal a life as possible. You are wonderful, inspirational and courageous. They say that God only gives up what we can handle, and perhaps that is true. You will shine wherever you go, and in whatever you do. Your smile is the window to your beautiful mind and soul. I will always remember your story and be humbled and in awe of your drive to strive.
December 19th, 2010 at 11:35 pm
Hola jordan, desde Colombia, te conosi atraves de la television,Quiero decirte que desde que te vi a ti y a tus padres no los he podido olvidar, Pieso que eres un ser maravilloso, Creo que a Dios le ha placido hacerte especial, talvez paraque el mundo entero aprendamos de ti,pues eres un ejemplo de vida.Aveces es mejor no preguntarle a Dios el porque de lo que nos sucede,pues El tiene un proposito especial con cada uno, creo que Dios te ama mucho pues te ha bendecido con unos padres tan valientes y amorosos, Sigue luchando como hasta hoy lo has hecho,y auque es dificil. Aprende a darle gracias a Dios en todos los momentos de tu vida y por tu vida misma, Desde aqui estare orando por ti cada dia, pues creo que Diosito es poderoso y puede hacer muchas cosas hermosas en tu vida,estoy segura! solo debemos creer y confiar en el. Desde Colombia mis hijos y yo te amamos y te deseamos lo mejor.
January 8th, 2011 at 11:01 am
Hello. My name is Annie, I’m from the Czech Republic. (A small country next to Germany, France, Poland). Now I saw on TV the story of Jordan. The whole time I was almost breathless, and could not believe how can anyone be so incredibly strong! I admire you for your optimism, smile and strength to fight! I wish your family good luck, health and love that you miss, and it’s nice
I’ll think of you every day and hope the distance with you for a better tomorrow! Greetings and keep my fingers crossed!
January 19th, 2011 at 6:14 am
Hi Jordan! We are from Argentina.. we saw your story on TV and we just wanted to tell you that we are very proud of you, you are a very cute boy and you have a great family!!!
We are sure everything’s gonna be ok, and we wish you the best because you deserve it!
German and Magali
ps: we love football too