My story

Thanks for taking the time to visit my JustGiving page myself and several others have decided to (stupidly) jump out of an aeroplane to raise some much needed funds for my sons charity Cavernoma Alliance UK. I will tell you Zanes story, which I have decided to tell in detail to show why this charity means allot to us.
Here goes... At 7 months old Zane quite poorly and we was told he had swine flu...... he got better but soon become poorly again, in fact over the next 14months was constantly poorly/sick/weak. The doctors told us it could be his teething, weaning or viral infections. Then last Christmas he was ill for best part of December, and eventually being hospitalised in January, after 4 days of tests and no answers, (he was pretty much unable to get out of bed at this point) they decided to do a Brain M.R.I, his scan was at 11am and they told us the results would be an hour or so, we was still sat there at 5pm waiting.
A doctor came and told us he has several clusters of abnormal blood vessels deep in his brain called Cavernous Hemangioma (cavernomas), one had haemorrhaged and this is why he had been so poorly. This is where CAUK comes in. We came straight home and goggled cavernomas which didn’t make great reading. Then I found CAUK, I and was given a wealth of information, all which was factual. I very quickly received an email from a woman who little lad had the same condition and had to have surgery on a cavernoma, amongst other messages from other parents all in similar situations.
A few days later we went to see a brain surgeon of 28 years at Addenbrookes in Cambridge, he said this was too rare for him and refereed us to a paediatric neurologist, when we seen him he was very dismissive (Zanes consultant at hinchingbrooke later told us he was quite intimidated by Zane being the youngest patient he ever dealt with this condition, making him very rare, Zane was just 2 the youngest before him had been 12)
We then went back and forth to Addenbrookes & Great Ormand Street several times while also still seeing the docs at hinchingbrooke.
The conclusion is that there is unfortunately no fix for Zane.
A few weeks back Zane had another brain mri, we got the results last week and unfortunately he now has more cavernomas, and 2 have grown in size considerably, and now every cavernoma is micro haemorrhaging. We hope & pray every day that he doesn’t have a major haemorrhage.
Zane in himself is doing well, he has several little side effects and he will need to be constantly monitored. Every hospital has told us that he will have a rough ride in life, which is every reason the Charity needs funds to keep it going and offering support to people and their families affected by cavernomas.
That is Zanes story so far. I know that times are hard for everybody out there, but please dig deep and help us raise much needed funds for CAUK.
Thank you in advance we would have been lost without them J

My gallery 4

My updates 13

Thanks to philomena & jonny Shelley for their £50 donation

31/05/12 21:23

Thank you to the family in Scotland for thre £50 donation, thank you uncle donny & auntie rosalin

31/05/12 21:21

Thank you to my family in Canada for their £100 which arrived in the post today! Thank you!

31/05/12 21:20

We would like to thank Richard & Tracey groom for their £100 donation

31/05/12 21:20

We'd like to thank CAUK member Sharon Coates for her £10 donation

11/04/12 21:29

My Teams

My company

My charity

Cavernoma Alliance UK

Cavernoma Alliance UK

Charity Registration No. 1114145

Cavernoma Alliance UK aims to provide advice and support for those with cavernous angioma through its organisational skills and by providing a service which makes the general public aware of cavernous angioma.

Donations 158

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Good luck with the jump and your fundraising, Best wishes Louise and family (former colleague of Jan's)

Donation by Louise Davies on 19/05/12

£10.00

+ £2.50 Gift Aid

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Good Luck Lee, You're all doing an amazing job, Zane is a very lucky little boy x

Donation by Amy + Paul Dutton on 18/05/12

£10.00

+ £2.50 Gift Aid

Wishing you all the best for your jump and best wishes to Zane x

Donation by Emma Pattison on 17/05/12

£10.00

+ £2.50 Gift Aid

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good luck, and keep going! xxx

Donation by shannan yazidi on 17/05/12

£10.00

+ £2.50 Gift Aid

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Good luck Lee xxx

Donation by Hannah Spencer on 17/05/12

£25.00

+ £6.25 Gift Aid

Donation by Anonymous on 16/05/12

£10.00

+ £2.50 Gift Aid

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Hope you reach ur target love to zane xx

Donation by Sue Desmond on 15/05/12

£10.00

+ £2.50 Gift Aid

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Good luck

Donation by kim aspeck on 14/05/12

£10.00

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Good Luck Lee with you jump. Wishing you and your family all the best love from Brian Donna Francis xx

Donation by Donna Francis on 09/05/12

£10.00

+ £2.50 Gift Aid

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lee and Kim and yor amazing family Good Luck Love Lesley

Donation by Lesley McNocher on 07/05/12

£12.50

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All the best!

Donation by Frank Plater on 06/05/12

£25.00

+ £6.25 Gift Aid

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Thankyou to the bingo ladies and phil!!

Donation by Jay on 03/05/12

£30.00

+ £7.50 Gift Aid

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Good luck mate.

Donation by Steve Leftly on 30/04/12

£10.00

+ £2.50 Gift Aid

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Good Luck !

Donation by David Potter on 29/04/12

£20.00

+ £5.00 Gift Aid

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Good luck mate. Awesome work so far!! My thoughts are with you and your family.

Donation by Simon Osborne on 25/04/12

£40.00

+ £10.00 Gift Aid

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Good luck mate. Zane is a beautiful boy and very lucky to have you as his daddy. Lots of love from Laura, Ross and Ryan X

Donation by Laura Paterson on 25/04/12

£10.00

+ £2.50 Gift Aid

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Good Luck on your jump. With love to you all. Claire Heron and Joan Walsh.

Donation by Claire Heron and Joan Walsh on 25/04/12

£10.00

+ £2.50 Gift Aid

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Smithy Good luck to ya mate. Thoughts and prayers are with you all... Admire your work! All my <3 son x

Donation by Mark Ling on 24/04/12

£20.00

+ £5.00 Gift Aid

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All the best for it mate,endless amounts of respect to you all x

Donation by Ross Baughan on 20/04/12

£10.00

+ £2.50 Gift Aid

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Hi Lee good luck with your jump and our thoughts and prayers are with you and your family.

Donation by Graham and Naomi Smith on 20/04/12

£100.00

+ £25.00 Gift Aid

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Such a amazing cause and a wonderful brave little boy good luck lee all the best :)

Donation by Chloe chapman & Matty marsh on 20/04/12

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Good luck Lee. Lots of love to Zane and you all.xx

Donation by Jodie Newton on 18/04/12

£10.00

+ £2.50 Gift Aid

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Good Luck Lee. I have a brainstem cavernoma and also attend Addenbrookes. I wish him Zane well for the future. x

Donation by Karen Woodley on 18/04/12

£20.00

+ £5.00 Gift Aid

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Good Luck with the sky dive Lee. Lots of Love and Best Wishes to Zane. xx From Margaret [Jan's Friend]

Donation by Margaret Chapman on 15/04/12

£10.00

+ £2.50 Gift Aid

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Best of luck with the jump Lee :-)

Donation by Sandra Phair (Lynch) Ireland on 15/04/12

£10.00

Donation summary

  • * Online donations$5,813.29
  • Offline donations$3,816.57
  • Text donations$0.00
  • Total raised$9,629.86
  • Gift Aid$1,366.60

* Charities pay a small fee for our service. Find out how much it is and what we do for it.