This is Violet Brave (yes that really is her middle name!) - so called because she was challenged from the start surviving her premature birth at 28 weeks.

After 98 days she finally went home at a whopping 2kg. At first, at home, she did really well but it became apparent she had a completely different challenge ahead as she produced alarming and painful kidney stones. She has now been potentially diagnosed with a very rare genetic condition ironically completely unrelated to her being premature. Her condition is called Primary Hyperauloxoria and she may have Type 1 - in short this means that she may need a kidney and liver transplant. In order to have the transplants she needs to grow to at least 10kg but unfortunately the nature of the condition is such that she has a low appetite and has to be tube fed. She recently had her 7th operation to insert a tummy tube to replace the one through her nose.

The Scottish Health Service have been amazing and we are all so thankful to them. We hope the transplants are not too far away now but she may have to have dialysis meantime. Once Violet is big enough and a relative donor is found she will need a long stay in hospital either in England or even USA. Her parents both work as Fire Fighters and Violet has four older brothers and sisters who will need a lot of care and looking after while mum and dad are away. As Violet's grandma I am raising funds to provide for travel and accommodation costs for mum and dad and some childcare costs to help us look after the others! We have such a difficult time ahead it would be nice to offer some little extras to the other children.

Violet's Grandad Clive is to embark on a trip across France providing practical support to his friend who is cycling from St Malo to Nice and hopes you might sponsor them to do this. They leave on 21st August and will be away for 3 weeks. Over that time I will post updates of their progress, as they are both in their 70's this is no mean feat. Granddad's recent knee replacement means he cannot cycle himself but he will be equally committed setting up/striking camp, checking routes, cooking, cleaning and washing up as well as maintaining the bike in good order!

If you would like to know more about Violet's condition you can find it on this link primary hyperoxaluria - Genetics Home Reference. And finally, thank you all for your help in whatever form that may be.