Jake has got a rare genetic disorder, Its 1 bad gene out if them all thats been passed down. Its called CCM3 - CEREBRAL CAVERNOUS MALFORMATIONS 3. Cavanomas are abnormal clusters of vessles with small bubbles filled with blood that make them look like a raspberry. Everybody can have 1 or 2 cavanomas and not be affected. Jake HAD 15 cavanomas on his brain and a tumour sized one on his brain stem, the one on his brain stem was squishing his nerves and needed to be removed. In april 2018 at just 6 months old jake had his very FIRST of many operations to remove the big cavnoma from the brain stem. It was a very risky and difficult operation. I was aware of all the risks including disabilities and death. After a 9 and half hour operation they Unfortunatly couldn't remove it all due to his heart rate dropping. The doctors had a few issues in the operation and a bit of damage was caused to jake. He ended up with Bells Paulsey 6th & 7th nerve Paulsey, his left eye started to turn in and he couldnt swallow which led him to then be fed by an NG tube. After his operation and some time in intensive care he was transfered hospitals closer to home so i could learn how to feed him through the NG tube and eventually got to go home. A few weeks later he started to throw up all his bottles after every feed, i thought he was just one of them sicky babies. By 11pm that night i had to call for an ambulance as he was very pale, floppy and unresponsive. Within 4 hours he had gone from one hospital, had a CT scan & was blue lighted back to the LGI for an emergancy operation as his scan showed he has developed Hydrocephulus.( Fluid on the brain) . In the operation they inserted a device called a VP Shunt. Its a tube that goes from his head to his belly and drains the fluid of his brain. Everyrime the shunt gets infected or blocked he has to have an opertion for it to be taken out then when hes recovered he needs another operation to put it back in. Jakes had over 30 operations on his brain before he was 2 and a half year old. He lost his smile, had development delay and MANY disabilities. After every operation he had to re learn all his skills over and over again. On october 1st 2019 Jake went for another opration to remove to rest of the cavanoma in his brain stem & insert a PEG into his belly. This one was 11 and half hours they manage to remove almost every part of the cavanoma other that the peice stuck to his actual stem.. Jake had a brilliant few months we thought it was all over he was learning how to crawl ect. Then in may 2020 Jake became very ill with a blocked shunt a massive bleed in his brain that almost killed him, but a little miracle happened and the bleed went down by itself after the shunt was sorted out and he got better. His doctors were so shocked that hes still with us. Then September 2020 i was told that he would have a short life maybe a few years as the huge cavanoma they thought was all gone had started to grow again and bleed a little. Since september and feburary hes been sick every day and we tried everyrhing to stop it and nothing worked. On the 5th feb 2021 i had the most devstating news that Jakes brain has become even worse. His scan shows the cavanoma from the brain stem has grown increasingly and is surrounded by lots of blood and shows a load more bleeds coming from the cavanoma. Unfortunately there is nothing more they can do for him now and its time they left him to rest whilst he can. Theyve estimated he has a few months left with us , could even possibly be the next few days/weeks in his sleep. We are gona spend this time making beautiful happy memories and cherishing all the time we have left together. My little man has had a very tough time and i want to make his special day the very best. As a family we will be very greatful for any donations you can help us with towards giving him the very special day he deaerves when that time comes.