Thank you for visiting bemoreOscar, following the devasting news that our beautiful, vibrant son Oscar has been diagnosed with a life-limiting degenerative neurological condition called Battens Disease we were compelled to share our journey. Maybe with an apology in advance to those of you that are finding out about our awful news for the first time, we hope you will understand why it hasn’t been
possible to contact everyone as you read on. He had begun to become isolated at school, choosing to play on his own and struggling more with basic academic tasks and social situations. So, finding out that Oscar had Autism didn’t faze us but actually helped us understand Oscar more and explained why he had always taken things so literally. Oscar has always been able to light the room up and his quirky, lovable nature always made him infectious. Family life continued at an extreme pace, as you can appreciate with two small boys, until wearing his glasses became a real issue for Oscar. His glasses prescription began to change drastically, and he was reluctant to wear them. It very quickly became apparent that Oscar was still struggling at school and he began to have more frequent bumps and falls. At the age of 7, after a routine visit to the ophthalmologist and many tests and appointments later, we learnt the devastating news that Oscar had Retinal Dystrophy which is a group of rare genetic conditions that would inevitably see our beautiful baby boy go blind and we knew that our lives would change as a family forever. Originally, Oscar was diagnosed with Stargardts disease but later in the same year his diagnosis was changed to Progressive Cone Rod Dystrophy, this was all so much to take in as a family and indeed to keep up with as things seemed to change weekly with Oscar’s symptoms. Nonetheless we battled on trying to keep Oscar in mainstream school with his familiar surroundings and his friendship groups, but it soon became clear that Oscar needed more specialist help than the school could give. The decision was made to move Oscar to a visually impaired school that specialised in working with children with complex learning needs. This was single handily the best decision we have ever made, Priestley Smith School in Great Barr have the kindest teachers and the most humbling environment you could ever walk in to, they are so much more than a school, they are a family. Oscar fitted in well and thrived in this tailored environment but as time went on, we became very much aware that Oscar’s vision was deteriorating rapidly and within a 12-month period he was registered as blind. This went against everything medically that we had been advised on and we wanted more answers. In October 2019 we self-referred to the Neuro disability team at Great Ormond Street Hospital and we fortunate enough to be contacted by wonderful doctor called Dr Ngozi Oluonye who talked to us about Oscar and agreed to meet with us to run some tests. In the 6 months leading up to this appointment Oscar had really started to develop mannerisms that showed signs of regression such as dribbling and coordination issues, all of which were ringing alarm bells. We had so many questions and worried day and night for Oscar waiting to be seen at Great Ormond Street. In December 2019 we had a family day out in London to visit the hospital and undergo extensive assessments and questionnaires, whilst the journey was an adventure for the kids, we were all thoroughly exhausted by the end of the day. All we could do then was to get back into the daily challenges of life at the Jealous household and wait to be called for further tests. Oscar’s 8th Birthday passed in a blur and Christmas came and went, the first where Oscar didn’t become overwhelmed at the sight of the piles and piles of presents. Hard for us to watch but our hearts would melt at the sight of Oscar’s 4-year-old brother Charlie describing every single toy that was unwrapped. In the February of 2020 we were called back to Great Ormand Street but this time without the kids, at this point you get the feeling that something isn’t quite right and begin to prepare yourself that this visit holds the potential to bring even more upset and anguish, but my god we had completely under estimated the impact of the news were about to receive. On the 26th February 2020, a day we will never forget, we entered a room with an unfamiliar face present along with the doctor we saw on our first visit. A specialist Metabolic nurse sat and help to give us the news on Oscar that would shatter our entire world beyond all repair. Oscar was diagnosed with a degenerative neurological condition called Battens Disease, a condition that still confuses us two months later, but the words that best describe its prognosis will always be clear. It is a life limiting disease with most children only surviving into their teenage years. We face a future with Oscar where he will develop further conditions such as Epilepsy, his motor skills will fail and will become unable to walk and talk, he will fully lose his vision and also memory equivalent to Childhood Dementia, he will lose the ability to swallow and will require feeding through a tube and will eventually become dependent on 24-hour specialist care. Words can’t explain the way our world has been torn apart, it would be very easy to hide away, to spend our days crying uncontrollably but we have limited time with our first-born child, as a family we will have to watch him slowly get worse as time goes on and now time is the most precious commodity to us! Over the last four years we have stood by Oscar’s side whilst he has dealt with some of the biggest changes to his life. Communication boundaries, losing his vision and now this. Oscar doesn’t know the outcome of the recent diagnosis but I’m sure his reaction would be the same as every other obstacle he has had to face, to not complain at all and just crack on with life. We can count on one hand the amount of times we have heard Oscar complain about anything and I’m pretty sure the times he has it has been related to Tipping Point, which is Oscars favourite program, or Harry Kane not being able to play football! Oscar’s 2nd cousin, Samantha Baker, once used the expression ‘Be More Oscar’ when describing how we should all look at life in a positive upbeat way the way Oscar does, and this couldn’t be more fitting! Growing up, most people look at their parents and aspire to be like them, but now we’re looking to Oscar and gaining inspiration from him! So now we wish to , hence the title of the page. As hard as this may have been for you to read, we need to get Oscar’s story out there to not only help family and friends understand our journey, right down to the bare bones of what we are experiencing day to day but also in in the hope that we can reach other families that may find themselves walking the same road as us. This disease is so rare that only around two children a year are diagnosed in the UK, so Oscar really is more than one in a million! We intend to bring you pictures, videos and updates on not only the negative things but the positive and happy things that happen to us as a family, making memories that can be treasured forever. Sometimes we will cry and sometimes we will laugh but most of all we will cherish every minute we have as a family. So Be Kind, Reach out, Subscribe, Like, Share, Get Involved but most of all
Thank you for listening, Much Love The Jealous Family # #
