My 8 year old daughter was diagnosed in 2017 with a brain tumour is was partially removed during an 14 hour operation. Emma quickly recovered from the operation. 6 months on and the tomour began to grow again, within weeks Emma was really poorly and was back in hospital to have it operated on again. The operation this time took 18 hours but again the tumour was only partially removed. Emma stayed sedated for 3 days until the decision was taken to operate and try again to remove the tumour,this operation was sucessfull, Emma remained sedated for a further 6 days. After being brought round it was soon realised Emma had many other problems which have been caused from where the tumour was in the brain. Emma now has a thrachyostomy, needs oxygen and is ventilator at night, Emma is tube fed due to not having a swallow. We do not know what the future holds for Emma we just take each day as it comes. Emma has to have 24/7 waking care which means someone has to sit with her and watch her 24 hours a day. For us to get the night carers that she needs Emma has to have her own bedroom which we do not have,we have 5 children so it is impossible for Emma to have her own room. Emma for the last 5 months has had her hospital bed in our living room,which for any 10 year old is not ideal as she has no privacy. We have applied for help with the extension but have been told that the grant will not cover all of the building costs, we will need to contribute in the region of £30,000. We are trying everything we can to raise the funds ready for the build to get Emma her own space and privacy whilst having the room for the carers for Emma to be safe. Emma and her 2 sisters have VHL which is what has caused Emma to have the brain tumour. VHL is a rare disease and Emma is one of the youngest people to have had a hemangioblastoma tumour.