Oliver will always hold a piece of my heart even though he sadly lost his battle with his benign brain tumour towards the end of 2008. His mum who is like a sister to me and helped us so much at the hospital, she will be leading our campaign to raise awareness about the benign brain tumour.Oliver Mckenzie Smart, was born on the 20th of June 2004, a final addition to our family, Ollie had an older sister and 2 older brothers,  a normal pregnancy and normal delivery,  and a perfect baby up until he was about one year old, then things started to  worry us, little things at first, he never seemed to settle and was constantly unhappy, car journeys were the worst, he would scream from journey to journey, it would take me ages to get to the shortest  of places, and he constantly had to drink, i mean all the time and his nappies would be so full all the time.After a few trips to the doctors and health visitors it was put down to nothing as Ollie was reaching all his milestones, he learnt to walk at the right time, there was nothing to say what was really happening inside Ollie’s head, and he was too young to tell us he had headaches, this carried on until Ollie was 18mths old, when things got dramatically worse.Ollie would vomit through the day, and just seemed so weak, and the drink situation just got worse, we learnt never to leave the house without litres off drink,  my fears were that Ollie could be diabetic so yet more trips to the doctors and health visitors resulted in nothing, they weren’t even prepared to do simple blood test, in fact my heath visitor told me to refuse him his drink as he was attention seeking, luckily i did not take her advice as we know now that would off killed him.In march 2006 Ollie was taken to the G.P’s surgery every day for four days, during this period we even called the G.P out to our home, i must state here that Ollie only saw the same doctor twice, but on our last call out the G.P walked into my house to see Ollie laying on the floor projectile vomiting and too weak to lift his head up ,the G.P turned to me and said that i should just give him calpol and not to call again as they would refuse to come out,  my heart sank i could not believe that they would just walk away without any investigation.We were all very worried and i was convinced that Ollie was going into a diabetic coma, why would no one listen to me,  i know they thought i was just over protective a so called neurotic mum.Later that day we carried Ollie into the A&E department at Nottingham’s QMC,  we were put into a side cubicle to be monitored, Ollie was barley conscious and only woke to vomit, after spending 6 hours they came round the curtain with a bottle of calpol and told us he had tonsillitis and to come back if things didn’t get better,  we couldn’t stand it anymore and at this point my husband Roger refused to take no for an answer and began to loose his patience, I begged them to let us see someone higher up and Roger went one step further and demanded it!We were just a normal family none of us coming from medical backgrounds, we didn’t know who to ask for or even what was available, we just knew we couldn’t leave that hospital!!Roger could no longer stand by and see his son lying there helpless. Roger caused such a scene that they actually called security to our cubicle and they tried to eject us from the Hospital. It was at this point that we got lucky, because another child in the cubicle next to ours was having a Consultant access them and because of all the commotion he came to look at Ollie, it took 5 secs, all he did was look into Ollie’s eyes and we were immediately rushed up to a ward awaiting an emergency mri scan !!!!!Within minutes we found ourselves on an oncology ward, and all i could see were sick children hooked up to machines, with no hair. I felt very strange and was still comforting myself with the thought that Ollie had diabetes and my child wouldn’t be this ill, how wrong i was!!  You ask any parent how it feels to walk on them wards and look at the other children, I still remember the first time Carl & Dawn brought Liberty onto the ward and the look on their faces, the same look me and Roger had when we were first brought here, when you don’t know whats wrong with your child it is the most scariest point off your life and it is something that will stay with you always. Ollie went for his mri and our whole lives changed, he had an craniophryngioma brain tumour,  but hey nothing to worry about its BENIGN so that’s ok but little did we know at this point that BENIGN tumours KILL!!!So yes he had a brain tumour but its the best one to have we where told, so our sons life is now in the hands off the professionals!!!  And so the hardest two years any family could imagine began.I will skip to the last few months, because from then to now our lives consisted off hospital care and operations,  all in all he had to endure 22 brain surgeries, in 2007 the day after id first met Carl & Dawn in the play room of ward e39 Ollie had his biggest operation and sadly this did not go well, he was left totally blind and paralyzed down his left side, a life with Ollie ended and a new life began. The next time Carl & Dawn were to see Ollie he was no longer running around playing. They had brought Liberty for her biopsy operation and i still remember them looking at Ollie and seeing the fear in there eyes!!Ollie coped very well actually being blind and spending his days in a wheel chair, i will admit he coped better than us, he returned to mainstream nursery where the children adored him. Ollie was approaching his fourth birthday and i think i knew deep in my heart that this would be his last, so a huge party was arranged, everybody told me not to worry all would be fine he was doing so well, well mothers intuition knows best,  the day of the party came  and guess where Ollie was, in hospital on a relapse, so 100 people  turned up and no Ollie,  a few months later we where offered a holiday by a local children’s charity, so we all went as a family,  that holiday i will never forget, he was so poorly we had to rush him to hospital half way through the night,  that night will stay with me for ever, they rushed him to theatre with collapsed lungs, due to it being in the middle off the night, different surgeons operated on him,  it was about 3 in the morning before they brought Ollie up to the ward e39.Four different specialists entered our room, and asked if they could have a chat, they where astonished at the state of Ollie’s body and the history off what he had endured. To say that Ollie’s body was like a patch work quilt  would be an understatement, a little body so full off scars. The specialists concluded that nothing else could be done for our special little boy and they admitted that they were struggling to keep him alive.They asked us if we wanted to carry on, that night was the hardest off my life i knew Ollie was tired, i knew he was blind, and i knew he would never walk again, nothing had worked the tumour just kept battering his body and had subsequently left him with permanent brain damage. So that night they took him back to theatre to tie off his shunts, which would eventually allow Ollie’s head to fill with fluid and send him to sleep, and Roger held me in his arms, i wouldn’t have got through those painful hours without him.  Please don’t anyone think this was any easy decision, they were asking us to let Ollie go, i couldn’t see him in pain anymore, and his life had now become full off pain.So we took Ollie home on the 4th august, with what we thought were a few days to live,  our home became a hospital with staff and equipment, all we could do was just sit watch and wait.  But still Ollie wouldn’t give in and he continued to fight his illness but he was very weak and experienced more problems. The whole thing became a nightmare, he had to have high doses off morphine, with his body so weak  his stitches wouldn’t heal from his last operation. As the days went by we found we where never alone with Ollie and the pressure became unbearable, so we asked for night care to be ended so that we could have special time alone with him our little boy.  I think Ollie knew this because he died on the 27th of October with just his family around him,  he died very peacefully and his struggle with a Benign brain tumour had finally ended Nothing could off saved Ollie, he had a nasty tumour, i know that , and it wasn’t the best tumour to have, they had only experienced two other cases off this type of tumour and both children had died, they don’t tell you that.And so back to the beginning, if the G.Ps had listened and took the time to look into his records maybe he could of had a quicker diagnosis,  the biggest problem there is the breakdown of family G.Ps, how many times do you see the same one all the time, after our gp told us he had never met a child with a brain tumour in all his practice, they need to learn that children can be seriously ill and to listen to the parents,  we know our children best.I don’t want to moan about Ollie’s care because he did have some wonderful care, and that care gave us four wonderful years with him,  but there are lessons to be learnt, until you’ve walked this path of caring for a sick child, you have know idea how hard the journey is and people can be ignorant and uncaring. That’s why through the stories of Liberty and Ollie we can make people aware of what life behind oncology and neurology wards for children is like, and yes children do go through terrible times but all we are asking is that this isn’t in vain, let us open the eyes of the world and raise awareness, through all this we can start to push governments to commit more funds to research and one day hopefully we can all sit back and say we felt there pain but we didn’t just sit by and watch we stood our ground we moved mountains and WE MADE A DIFFERENCE!!!!!