Lee Smith
Lee's CAUK Jump
Fundraising for Cavernoma Alliance UK
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