WOW!!! A HUGE THANK YOU FROM US ALL, WE HAVE BEEN BLOWN AWAY BY YOUR SUPPORT AND GENEROUS DONATIONS. RICH COMPLETED HIS LAST DAY WALKING HOME FROM OUT PAST HOLMFIRTH YESTERDAY HE REALLY DID OUR PRINCESS OLIVIA PROUD. OLIVIA JOINED HIM FOR THE LAST MILE AND TOLD ME WHEN SHE GOT HOME SHE WOULD NEED A BATH, SOAK HER FEET AND A MASSAGE, BLESS HER! XXX
My name is Olivia and I have a rare genetic condition called Prader-Willi Syndrome.I was diagnosed on the 1 April 2011. I am a very special little girl and you can read all about me and my story at www.olivias-story.co.uk
Imagine always being hungry and being told to stop eating otherwise you will become obese and very ill as a result
Imagine being unable to take effective exercise to stop this happening..
Imagine having to take drugs so that your body can grow properly
Imagine having to always be dependent on someone to intercede for you.
WELL THAT'S what it is like with Prader-Willi Syndrome.
Prader-Willi Syndome is a very complex condition and is caused by a baby failing to receive active paternal genes, a specific section of one chromosome 15. Each individual is affected differently however the main characteristics are low muscle tone, lack of physical growth, small hands and feet, sexual immaturity, learning difficulties from mild to severe, behavioural difficulties, emotional issues, obsessiveness and an increased interest in food which can lead to excessive eating and life threatening obesity. Olivia has been obsessed with food from being 18 months old and we have to manage her diet very strictly. Olivia is already presenting challenging behaviour around food. She feels hungry most of the time but because she does not burn calories like other children, due to her tone she is on a very low calorie diet. The syndrome is known as one of starvation as Olivia and others with PWS are always hungry and never feel full – this will be for the rest of her life.
To name a few other symptoms are diabetes, sleep apnea, scoliosis, poor temperature control and skin picking. We are currently dealing with Olivia’s new obsession of picking healthy skin on her arms and it is very upsetting as she doesn’t seem to be able to stop. We watch her all day so that she doesn’t pick and then whilst she is in bed she starts again. We have gone from plasters to now having to bandage her arms so she can’t get to the broken skin. For more information about PWS please go to www.pwsa.co.uk
To help raise invaluable funds for the Prader-Willi Syndrome Association my daddy and big brother Benjamin are doing sponsored walks commencing on 25 August 2011
My Daddy will walk four marathons in four consecutive days! a total of 104 miles And I will join him for the last mile! also my big Brother Benjamin will begin the walk with our Daddy and complete 26 miles.
Me and my Mummy are very proud of Daddy and my Brother and I am very lucky to have them.
The Prader Willi Syndrome Association is a registered charity and the only organisation in the UK dedicated to providing information and support to enable people with PWS and their families to live successfully. Me and my family have already received invaluable support from the PWSA. They do not receive any government funding but rely on the commitment of members and supporters generosity
PWSA Mission Statement - We exist to improve the lives of people with PWS and their families, carers and all who work with them. We champion their rights and provide information, training and support to all involved. We stimulate research into the management and alleviation of the disorder
The vision of PWSA - A world where PWS is not a barrier to a healthy and successful life.
Please help by sponsoring Richard and Benjamin to help raise funds for the PWSA. We are very grateful for any donation you are able to make. (If you dont like donating on line please contact Rich, Benj or Karry as we also have paper sponsorship forms. (All donations will go directly to the PWSA)
Thank you for visiting my page. Your donations and support of the PWSA means so much to me and my family and with wonderful people like you it will mean the work of the PWSA can continue to support people like me and their families in the future
Please, please dig deep. Your donation will make a difference x
