In October 2007, my nephew, then aged 4 had a huge seizure and it was thought that the cause of this was epilepsy. Up to that time he had not shown any signs of having any problems. He went through a series of further tests over many months, during which he had further seizures.
In June 2008 Harry was diagnosed with Late Infantile NCL (a specific form of Batten’s disease). Batten’s disease is a regressive disorder so from being a happy 4 year old learning to talk, run around, and eat normally Harry rapidly began to deteriorate. In June 2009 Harry was so critically ill following a major seizure that he was given the last rites and the family were told he wouldn’t survive the next 2 hours.
The good news is that Harry pulled through this episode, but the bad news is that it left him even more disabled. He was no longer able to feed normally – he had a tube fed directly to his stomach with a specific diet. He had started to lose his cognitive faculties before this seizure, but since the seizure his life has been a silent one. He can no longer see or have control of any part of his body, and we don’t think he is able to hear or feel anything - if he can he is not able to show this in anyway. He has been reliant on 24 hour specialist care for almost 2 years now and will continue to do so until he eventually dies.
There is no cure for his condition and the only certain outcome to this is that he will die. The average life span for this condition is 7 – he is 7 next month (in May) so as a family, especially Harry’s close family, we are really dreading the immediate future.
In what little way I can I have chosen to support the organisation that has been a pillar of strength to Harry and his family – The BDFA (Batten’s Disease Family Association) who carry out research into this horrendous condition and also support families that have to live through the nightmare.
It is very difficult to support Harry and his family in any practical way, however there are families, like Harry's who are living a nightmare – watching their child / sibling slowly die. No parent expects to have to attend the funeral of their children, let alone one so young. Harry’s condition is so rare that at the time he was diagnosed there were only 10 families in the UK that were diagnosed with this strain of Batten’s disease, and we were told only 200 worldwide.
As such to support the BDFA I will be cycling from Land’s End to John O’Groats (about 900 miles) leaving Land’s End on 21st May. Most people cycling this route would aim to complete this between 10 and 15 days, but I wish to increase the challenge and complete this by May 29th – 9 DAYS! (an average of 100 miles per day)
Please can I ask you to dig as deep as you can to donate to this very personal, but worthwhile cause to help the scientists find a cure for such a horrible condition. No child (or their family) deserves to have to go through this.
If you wish to follow my training activity (and associated thoughts) and my progress during the ride itself, please go to this URL (just copy and paste it into your browser):
http://supportharrymillsop.blogspot.com/
I'd would like to particularly thank my wife for providing a fantastic amount of support to me over the past few weeks, and the coming weeks. Whilst I may be doing the training, this is very much a team effort. Without her fantastic support, I would not be able to take the time needed to train - or do the ride. Thank you Hester.
I'd also like to express my thanks to companies supporing me in this venture - www.viewranger.com for navigational software and www.sportshadesonline.com for eyewear.
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Thanks Sue Donation by Tim Millsop on 12/03/12 |
£50.00 + £12.50 Gift Aid |
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Thanks Pam and Robin for your support Donation by Tim Millsop on 05/09/11 |
£20.00 + £5.00 Gift Aid |
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In memory of our precious granddaugter Emma who also suffered from Batten's disease. John & Pat Parkinson Donation by John Parkinson on 01/09/11 |
£25.00 + £6.25 Gift Aid |
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A really good effort, Tim Donation by Ingelore on 08/07/11 |
£20.00 + £5.00 Gift Aid |
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Well Done Tim ! Respect indeed. Look forward to hearing all about it. Enjoy the rest before the next challenge ! Cheers, Dom & Charlotte Donation by Dominic Bowers on 05/07/11 |
£40.00 + £10.00 Gift Aid |
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Best wishes from us all at John Sisk & Son Donation by Alison Farrant on 05/07/11 |
£100.00 |
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Wel done, Tim. Fabelhaft! Donation by TK on 04/07/11 |
£20.00 + £5.00 Gift Aid |
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Well done Mr MIllsop! Donation by Hilary Harley on 26/06/11 |
£20.00 + £5.00 Gift Aid |
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Thank you to Karen, Alice's (Crispin's friend) mummy and Jane for the generous support Donation by Tim Millsop on 24/06/11 |
£48.00 + £12.00 Gift Aid |
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Congratulations - great cause. Donation by Jon Tucker on 16/06/11 |
£10.00 + £2.50 Gift Aid |
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Well done on such a fantastic ride & for raising so much money! Lots of love from all of us Fitzs x x x x Donation by Naomi Fitzgerald on 14/06/11 |
£75.00 |
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Congratualations and well done Donation by Janet O'Sullivan on 13/06/11 |
£10.00 + £2.50 Gift Aid |
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Well done Tim, massive achievement. I expect you are enjoying a rest from the bike! Donation by Oliver Pitt on 12/06/11 |
£10.00 + £2.50 Gift Aid |
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Good riding Tim! Well done. Donation by Justin Bass on 10/06/11 |
£15.00 + £3.75 Gift Aid |
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Claire M mentioned what an incredible feat of brain & brawn you'd achieved all in aid of such a great cause. Well done, Tim!! Donation by Laura Gelder-Robertson on 09/06/11 |
£20.00 + £5.00 Gift Aid |
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Well done on raising so much - whats next? Never heard of Battens before, but clearly an incredibly deserving cause. Donation by Adrian Pepler on 07/06/11 |
£10.00 + £2.50 Gift Aid |
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Very well done Tim and for such a great cause. Donation by Jean Hunter on 06/06/11 |
£10.00 + £2.50 Gift Aid |
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Well done Tim, great effort! Love Ginny, James, Susan and Merwyn. Donation by Ginny Cunliffe on 06/06/11 |
£35.00 |
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Simon passed on your details, best wishes Donation by Karen Manning on 05/06/11 |
£10.00 + £2.50 Gift Aid |
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Well Done! Donation by Ivan Kirov and Family on 02/06/11 |
£50.00 + £12.50 Gift Aid |
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Well done Tim Donation by Kevin and Jo on 02/06/11 |
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Well done Tim! Donation by Claire Ingall on 02/06/11 |
£10.00 + £2.50 Gift Aid |
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Hi Tim, Well done you and lots of love to you and your family. Liz and Jon x Donation by Jon & Liz Calver on 02/06/11 |
£70.00 + £17.50 Gift Aid |
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Thank you to all those that have given cash whilst on the cycle ride or those that have donated cash in smoe other way. All very generous! Donation by Tim Millsop on 02/06/11 |
£130.00 |
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Donation by Karl Millward on 01/06/11 |
£100.00 + £25.00 Gift Aid |
| * Total raised online: | £6,004.00 |
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| Offline donations: | £1,053.00 |
| Mobile donations: | £0.00 |
| Total Raised: | £7,057.00 |
| Gift Aid plus supplement: | £1,327.25 |
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