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