Well - as tempting as it is to dedicate my Things I Love post to more trivial things, I decided that, with tonights Channel 5 documentary (Hayley: The Worlds Oldest Teenager) and the sad death of Harry Moseley this week, I would rather pay tribute to
the people who inspire me.
When asked the question in online surveys, by my penpals etc - my mind immediately springs to the usual answers "my favourite celebrities" or "my mum". And while these people are bound to inspire us - it saddens me that I often forget people such as Hayley Okines and Harry Moseley, and the many more like them, who are so truly inspirational.
And so I would like to share with you a little about them, and also a few other UK children who have experienced more pain and suffering in their short lives than many of us will ever face in our lifetimes:
Hayley Okines (pictured above) - Hayley is a 13 yr old girl who was diagnosed with the aging disease Progeria in 1999 at age 3. Progeria is a disease which ages its sufferers at eight times the usual rate - meaning that Hayley and others with the illness have a life expectancy of 13.
Hayley has campaigned, both to raise awareness of progeria and for more medical study into the disease and possible cures, for the majority of her young life.
In the documentary shown tonight, Hayley's usual positivity and amazing spirit was ever present despite her being fitted with a hip brace which she must wear 24 hours a day and which prohibits her from running or walking more than a few yards, and despite her desire for hair "like a normal girl" and the ability to buy clothes aged at her age range rather than shop in the childrens ranges.
Hayley is well aware that she has now reached the average life expectancy for a person with progeria and is currently taking part in a drug trial aimed at prolonging the life of progeria sufferers - Hayley stated that she wanted to live longer as she "loves life, and its ups and downs" - how much more inspirational can you get?
Hayley has written a book about her extraordinary life which she says she would love to be a No1 seller, the book will be released on 24th November, and is entitled "Old Before My Time: Hayley Okines Life With Progeria".
Harry Moseley
Harry was diagnosed with an inoperable brain tumour in 2007 - who can possibly imagine the horror of such a diagnosis? But instead of wallowing in self pity, Harry and his brave family set out on a campaign to raise awareness - both of Harrys own plight and of this terrible form of cancer - Harry was given the impressive title of "Britains Kindest Kid" after he amazingly managed to raise £500,000 for brain cancer charities through his website www.helpharryhelpothers.com - Harry started his own bracelet making business, selling the bracelets through his website.
Sadly, Harry fell into a coma in August and passed away at home in his mother Georgie's arms on 8th October 2011.
Gone but not forgotten, Rest In Peace Harry....you helped so many in such a short time. For anyone who wishes to donate to the cause that Harry worked so hard for , please go to his aforementioned webpage.
Billie BainbridgeAnd finally, for the story of a little girl local to me - 4 year old Billie Bainbridge is from Exeter, where I currently live.
5 months ago, Billie was just like any other 4 year old girl - playing with dolls, drawing pictures, and getting ready to start school in September.
Unfortunately, by the time September came - Billie had been diagnosed with a brain tumour that medical professionals in the UK call "Inoperable". Tragically, Billie's mother Terri is also fighting breast cancer.
Unable to resign their daughter to this fate, the Bainbridge family spent days upon end researching the little girls' disease and eventually found a medical trial taking place in Texas, which may still be able to give their daughter a chance.
An early diagnosis was that Billie would not survive the year, however thanks to the kind efforts of the public to pull together and send the little girl to the US - she is now in Texas taking part in the trial, and there have been reports that the tumour has shrunk by 50%. I hope & pray that Billie's health will continue to improve.
If you would like to donate to the fund to keep Billie in the trials, please go to www.justgiving.com/billiebutterflyfund
Lora May Friday I don't want to go into too much detail about this as Lora is a member of my family, and I feel it may not be right to go into it too much.
However, it doesn't feel right to make a post about brave and inspirational young people without mentining my cousin - Lora battled a brain tumour herself, and sadly passed away earlier this year.
Lora was 21 when she passed. RIP Lora May.
It may seem a little odd putting this under a Things I Love Post - obviously I hate the fact that these children are ill and suffering. But I love them for their positivity and determined natures, the strength they have shown in the face of adversity. It makes me think that my own struggles are nothing compared to theirs, and yet their attitudes and outlooks on life put me to shame.
Looking back through this post, its hard not to think how brave, special, intelligent, positive and all-round amazing these children are - they are not victims of their diseases, they are heros in my eyes. And it only makes me think that there has to be some truth in the saying that God only wants the best up there with him....I am sure Harry is with him right now, the brightest star shining in the sky tonight .... and I hope that you will join me in saying a prayer for Hayley & Billie tonight, in the hope that they don't go and join him just yet as there is more good for them to do here on Earth.
