NB/ Before you start i must point out the event date is wrong, it is the 13th april 2008 - just over a month away!!
Also if anyone would like to become facebook freinds, our username is "Peter An Claire Davey"
My name is Tie Davey, I am now 18 months old. I have Severe Recessive Dystrophic Epidermolysis Bullosa, EB for short.
WHAT IS EB? Well, my skin doesn’t stick together properly, so if I bang myself or my clothes rub, my skin comes off or blisters badly. This does hurt me but when I get tired I still rub my eyes and cause wounds around my eyes and on my nose. After rolling over in bed i have up to 40 blisters by the morning, my mum and dad have to lance and drain these for me each morning. Sometimes after drinking I get them in my mouth too or down my throat. When this happens I struggle to eat or drink until the pain dies down. This is because it affects all my internal linnings aswell. Recently my little sister accidentally stood on my little finger, all the skin came away from the tip to the base of my finger - i screamed in pain, my mum and dad huriedly dressed my finger and gave me morphine and paracetamol to ease the pain but it hurt for some time afterwards still - they say i am a brave little soldier. I wish i didn't have to be!
I have been in pain from day one, I was born without any skin on my feet as i kicked it off when i was in my mummy's tummy and although the skin has grown back now, I still need my dressings on my feet as I keep banging them when I kick. I have knocked the skin off my elbows a few times now, I don't get blood blisters under my nails any more because they have all fallen off. Sometimes my legs gets itchy around by my ankles - but when i rub my foot on my leg to stop the itching - the skin rips off and it hurts alot . My mum and dad keep socks on my feet and put trouser pjs on me to try and stop me , but i kick off the sock and roll my trouser legs up.
If i have alot of open wounds i have my special bath, which is purple to kill bugs - the purple water stings my wounds but the morphine mum or dad gives me helps a little.I accidentally scratch my face and chest when i have a bath and cause yet more blisters. My dressings are changed after my bath about every three days, i try to keep still for mum and dad, but the pain is too much sometimes and i have to fidget..
Only time will tell how EB will effect my life , but I know I will probably need a wheelchair as walking will damage my feet, I've been told my fingers will web and deform from the age of three on - so I guess I won't be doing any piano recitals. Alot of children with this condition need feeding tubes in their tummys as their throats narrow too much to eat through blistering and scarring.
I may die young if I end up with skin cancer at an early age, or if Eb weakens me too much i could none recover from an infection - but i am a strong little boy so i don't think that wil happen (touch wood). I've been told that 30 years is my life expectancy due to the skin cancer that we get with E.B. on top of that i am always fighting infection and fluid loss from my wounds - these are both potentially life threatening, and i nearly lost my battle to MRSA when i was only two weeks old in hospital, but my mummy brought me home to die amongst my family and their TLC made me fight the bug off.
My mummy and daddy try and make my life as fun as possible and they like it when i smile. I want to do so much in my life like running and playing in the park and hopefully one day it will be safe for my mummy and daddy to give me a hug without worrying about what damage they are doing to my skin and internal linings..
Thank you all for sponsoring my daddy, he hopes that with all your support an effective treatment or cure can be realised early on in my life to stop my suffering and the suffering of EB sufferers worldwide.
I WAS ON THE TELLY!!!
I was recently featured on, 'Wales this Week' , i was having a good day when they filmed me, by visiting the DebRA website and selecting About EB, Real life stories, Tie Davey - you will then be able to follow a link from the page to see the documentary :).
Thank you all very much, Tie
Use the links below to get in touch if you want a collection pot in your reception area, or if you would like to organise a fundraiser to raise sponsorship.You can also find us on www.facebook.com and we have a number of groups set up on facebook for our upcomming events! on facebook search for "Peter An Claire Davey"
If you want a jpeg of Tie's latest Newsletter emailed to you or just want to talk, then email his mum or dad at email@example.com (we are changing isp's right now - so there may be some delay in replying - if urgent contact Tony Eckersall at the address below:)
If you want to organise your own fundraiser for my son and the 5000 other uk sufferers then ring Tony (nice bloke) Eckersall on 0161 286 5340 or 07786 575512, he will give you any support or advice you need - his email firstname.lastname@example.org
Thank you very much, together a cure will be found
Every £5 will fund 15 minutes of research.
£20 will bring hope of effective treatment one hour closer.
£75 will provide an EB Health Care Specialist for a day.
£150 funds a researcher bringing the reality of a cure one day nearer.
Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: DebRA will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.
Many thanks for your support.,