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» Tilly's Progress 2
Published 02/23/2012
Apologies but we have been having problems with the website lately.
Tilly has been home for some time now and is doing okay! She is attending her new school, The Endeavour, in Brentwood for half days and it's a wonderful place that she enjoys very much.
Thanks to everyone who follows Tilly, greatly appreciated x
» Tilly's Progress
Published 08/12/2011
Tilly has made remarkable progress over the past few weeks and came off PICU about 10 days ago. She is now on Penguin Ward and is undergoing re-habilitiation and physio with the possibility of getting back home in 3 weeks time.
Many thanks for all your kind messages of support for Tilly.
» Tilly
Published 07/7/2011
Tilly suffered a heart attack on Sunday and is currently on Intensive Care at Great Ormond Street Hospital.
We were told on Sunday night to fear the worst outcome within the following 12 hour period, but Tilly is fighting as she always has done so please keep preying for our beautiful daughter.
A long way to go and she is still ventilated and various drugs are keeping her going but a glimmer of hope is a big step from previous days of this week.
» Tilly Hospitalised
Published 06/28/2011
Tilly was rushed to Great Ormond Street on the weekend and is in a serious condition. There are a number of complications including pneumonia and she is on permanent oxygen supply and being monitored very closely by a large number of Teams.
This is a very difficult period.
» Tilly's Health
Published 04/24/2011
Due to pneumonia being missed as diagnosis in the UK, despite 2 visits to doctors and being told it's a sore throat!, Tilly's one week trip for treatment at the NIH in Washington DC turned into a month!!!
Tilly started a new medication, but we had to wait for the pneumonia to clear before the infusion, and we are now hoping for some upward movement in both pain and mobility.
In addition, it is now believed that Tilly has a totally unique condition, a one off, and we will know more hopefully in 6 months following genetic testing at the NIH.
Tilly is now struggling with:
Cannot lift her arms above waist level
Neck pain due to curving of the spine
Left hip completely out of the socket again
Struggling to grip items or for prolonged periods
Condition attacking various parts of the body
The need to attend the NIH is increasing and we will need to go back within 6 months.
Not good times for Tilly and difficult to watch as loving parents.
The need for fundraising to ensure we can take Tilly to the NIH is more evident than ever so any help with ideas will be greatly appreciated.
Take care and thanks for reading about my beautiful daughters struggle with life.
Featured Articles
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Tilly's Operation
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Tilly is finally leaving for Washington DC next Saturday, September 22nd, with Research taking place from Monday 24th Sept.
Following the Research, Tilly will be transfered to Virginia during the first week of October to undergo hip surgery.
Feeling nervous now the time has come, but full of hope that Tilly can realise her dream to walk independantly.
There are so many kind people to thank for the past incredible year of raising funds for Tilly, it will take a lifetime for me to thank all of them.
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Documentary Video of the White Collar Boxing Show!
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White Collar Boxing - Please Read!!!
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Friday 13th July 2007 at The Venue' in London!!!
I will finally be boxing in 3 weeks time! I have been training for a few weeks now and despite training 2-3 times a week, it's not getting any easier!!!
I have a brilliant trainer, Micky, at the Real Fight Club who is pushing me all the way in support of the up an coming event.
Alan Lacey, founder of The Real Fight Club, has been magnificent in helping myself and 'Tillys Appeal Fund'. He is informed me last week that the profit's raised by the intended auction event on the night will be donated to our cause. This kind support is very well appreciated but I am not surprised to be honest as Alan is a very decent man.
Colin in training with proud Tilly supporting her dad
For ticket information please contact: www.therealfightclub.co.uk
The profits of the proceeds for sponsorship and the auction will be split between 'Tilly's Appeal Fund' and 'The Richard House Hospice'. The hospice opened recently in London and provides support and restbite to parents and their terminally ill children. We have access to a local hospice and know the incredible support that is given during the most difficult times faced by parents with terminally ill children.
Please offer your support by kindly offering to sponsor me, Tilly's dad, for the up and coming event!!! Should you wish to support by sponsoring, please email me: colinbailey828@btinternet.com
Looking forward to the event and to hopefully raising a helpful amount for both very good causes, with your support of course!!!
Kind regards
Colin
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Golf Day at Abridge Golf & Country Club
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A very kind friend of my father, John Knight, has been working hard to organise a special golf day to help raise funds for Tilly's cause.
The date has been set for the Friday 5th October 2007 at the Abridge Golf & Country Club and will include the following:
9 Holes of Texas Scramble in the Morning
18 Hole Competition in the Afternoon
A Wealth of Prizes including the chance to win a Mercedes-Benz C Class Sports Tourer for a "Hole in One"
Breakfast, Tea and Sandwiches (lunch) and 3 Course Dinner
After Dinner Speaker
Auction Event
For more information please go to the following press link:
www.knightbuild.co.uk/press.html
The cost for each Team of 4 will be £800, please email if you are interested in participating in such a great day to:
john.knight@knightbuild.co.uk
Thanks to all your support, and particularly John Knight and all at Knight Build Limited.
Kind regards
Colin
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Oilfield Insurance Agencies Limited donates £25,000 to "Tilly's Appeal Fund"!!!
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I am so pleased to tell you all that we have been given a cheque for the amazing sum of £25,000 for the fund!
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Recent Articles
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Barn Dance - Saturday 21st February 2009
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Wendy Neale has very kindly organised for a Barn Dance at Navestock Village Hall on 21st February 2009 in aid of Tilly's Appeal Fund.
The first dance is at 7.30pm and the night will end at 11pm. A raffle will also be taking place during the evening. Anyone who is interested can contact me through the website or call me on: 07975-978082.
Tickets are £8 for adults and £2 for children.
Please support!!! Wendy has kindly made a huge effort to organise the event and we are very grateful to her for her kindness.
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£500 Donation!
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A close friend of ours, Ashley Smith, discussed Tilly's plight with a friend of his over the past few weeks. His friend was very touched by Tilly's story and, subsequently, decided to approach his Company to ask for support.
As a result of his approach a large financial City based company has very kindly donated £500 to the Fund.
We thanks you so much for your kindness in helping towards our daughter's plight.
Kind regards Colin
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Football Match on Sunday 11th March at Thurrock FC
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Dave Newman of Essex Police has kindly arranged another football match to help us raise funds for Tilly.
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Special Thanks To The Following For All Their Support
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There are so many people we'd like to thank for all the help and support gien to Tilly and us over the years, here are just a few.
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£5,000 Donation!
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A large City Financial Institute has very kindly donated £5000 from their benevolent fund to Tilly's Appeal Fund!
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