We are hoping to raise an additional £15,000 to top up our £30,000 DFG (Disabled Facilities Grant) for adaptations to our home to make life easier for Jessica. Due to regular TIA's Jessica is unable to get upstairs to her bedroom safely. We are therefore trying to create her a ground floor bedroom for her to sleep, rest and play safely in. Due to the layout of our house the only way to achieve this is by converting our current kitchen into Jessica's bedroom. Then we will be building a small, single storey extension which will become our kitchen and living space.
We are unable to fund the project ourselves and are therefore asking for help. We can't even begin to tell you how much this will change our lives, especially Jessica's. She's been through so much and deserves to have a safe place which she can call her own. Somewhere she can rest and recover, sleep and play safely without any hazardous stairs to encounter.
The layout of our kitchen/living space has been designed with Jessica's anxieties in mind. It'll be all open plan and easy for Jessica to get around. We will be recycling all our kitchen units and any materials where possible to help keep the costs down. Jessica's room takes priority and it would be amazing if we could completely finish her room (flooring etc). We'd also like to ensure our garden is 'tidied' up once the project is completed to ensure that it's a safe and fun place for Jessica and her sisters to enjoy and play in.
Well there is quite a lot which could be said for Jessica, and many words we would use to describe our wonderful girl. Kind, creative, beautiful and above all strong. Jessica has a great sense of humour and will often chuckle away whilst watching only fools and horses and everybody loves Raymond. Above all Jessica loves a laugh, and loves gatherings with her family and friends. Whenever you see Jessica, she won't be too far away from any arts and crafts and she always carries around with her a colouring book and pencils. Jessica just loves being creative and it's her way of escaping when things get tough. It goes without saying that she is a much loved little soul, with the biggest of characters and touches everyones hearts that she meets along the way. Jessica never ceases to amaze medics and her loved ones.
Our world came tumbling down back in March 2011 when we raised concerns with our GP about the movement of Jessica's eyes. They kept darting left to right and as Jessica was our first born we really didn't know what to think or expect. Our GP and health visitor didn't waste any time in getting us seen at our wonderful local hospital and within a few days, on the 3rd March we were given the news that our beautiful fun loving baby had a brain tumour - a crainopharyngioma, and we were quickly transferred to the John Radcliffe Hospital. From that moment our lives changed forever.
We were, and still are extremely lucky enough to have the most amazing team of medical professionals who quickly operated on Jess and removed some of the tumour. Due to the location of the tumour the operation came with lots of risks attached. It was stuck in the middle of her brain, fused to her optic never, pituitary gland and major blood vessels. The 9 hour operation went smoothly and her consultant was pleased with how the surgery went. Jessica made good recovery and we were left to rebuild our life with a brain tumour in tow. However it quickly became clear that this tumour wasn't going to go without an almighty fight. A few weeks later we discovered the tumour had grown back but this time with cysts attached to it – her consultant yet again attempted to remove as much of the tumour as possible in another gruelling and agonising operation and we were then told that Jessica would also require radiation to give her the best possible chance of survival. After lots of research and a quick fundraising frenzy we managed to get Jess proton therapy in the States. Jessica's brain was still very young and therefore proton therapy carried less risks compared with regular radiation in the UK.
Proton worked it's magic on Jessica's tumour and her lastest scan in April 2018 showed slight shrinkage...yippee! However proton and all the operations that Jess has undergone over the years (and there has been a few) has left Jessica disabled, with moderate learning difficulties, short term memory loss, no piturity gland, visually impaired and the most worry - bilateral carotid narrowing and high risk of a major stroke. The narrowing of the arteries means she has regular TIA's (transient ischaemic attacks or "mini strokes"). When the TIA's hit, Jessica loses all movement to her left hand side making it impossible to get her to bed safely. Currently the TIA's come and go and Jess has her team of medical professionals baffled at how well she is coping considering she only has one fully functioning artery in her brain.
We are therefore trying to raise important funds for adaptations to our home to ensure Jessica has a safe place to rest and sleep at all times on the ground floor. We've been granted a DFG (Disabled Facilities Grant) of £30,000 but works are estimated to be around £45,000 - so we are trying to raise the additional £15,000 with Sullivans Heroes' support.
We would be eternally grateful for your support and thank you for taking the time to read our story.