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My daughter was diagnosed with tuberous sclerosis fours years ago when she was 12. Please help me and the rest of my firm, Ashmole & Co, raise money for the Tuberous Sclerosis Association, to help her and others with the condition.

Katie was quite unusual in that most sufferers of TSC are diagnosed at a very young age. She managed to get to 12 years old with no problems, but when the diagnosis did come it was very much out of the blue – a visit to the optician resulted in a brain tumour being diagnosed two weeks later, with 8 hours brain surgery just four days after that. 

The tumour that she had affects about 1 in 20 TSC sufferers, with the condition itself affecting about 1 in 8,000. The tumour was benign, but the problem with this type of tumour is that if it grows, it will eventually block the flow of CSF fluid through the brain causing hydrocephalus – this can lead to headaches, seizures, blindness and ultimately death.

During the first operation in 2009, the surgeon was unable to remove the tumour in full, leaving about 5% behind. This would only cause a problem if it grew back and there was a possibility that it wouldn’t – tumours of this type tend to be slow growing, but for reasons unknown, growth can then accelerate without warning. This is usually when the sufferer is young but there is some variability

By February 2012 we had been told that there was a cystic (fluid filled) element to Katie’s tumour and that further surgery would be needed.

So she had her second (and third!) brain operation in late June, and, after a bout of meningitis, (unrelated to TSC, but a complication of surgery) she was out four weeks later.

In October she had a scan and we received the excellent news that there was no sign of the tumour. She will continue to have regular check-ups.

Other problems Katie has had include being told the day before her initial operation that she also has two tumours in her heart. Fortunately, although it is likely that these were a danger to her during the first year or two of her life, it is not thought that they will cause her any problems in the future. And in early 2011 she was diagnosed with epilepsy – now fortunately controlled with medication. Most TSC sufferers have epilepsy - the surprising thing is that Katie did not get it earlier. 

Other problems that can be experienced by TSC suffers include autism and learning difficulties and tumours in the kidneys, lungs, eyes and on the skin.

Katie has continued to have a positive attitude, progresses very well in school (she’s now16 and sits her GCSE’s this year) and in many ways continues day to day life just the same as the rest of us. However, at the moment there is no cure for the condition and we hope that the fundraising will help the TSA in the quest to find a cure in the future.

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So please dig deep and donate now.