An eight-year-old schoolboy and his family have launched an incredible bucket list, after he was diagnosed a rare life-limiting disease that mimics dementia.
Oscar Jealous was diagnosed just before lockdown with Batten's Disease, a cruel neurodegenerative illness that afflicts only a handful of children every year.
It has been described as a childhood form of dementia because it gradually robs youngsters of the ability to speak, swallow and see, and also causes epilepsy and memory loss.
Parents Alex and Dani Jealous from the Great Barr area of Birmingham, say they are heartbroken but determined to fill every moment of Oscar's life with joy - with a little help from their family and friends.
Together they have launched a bucket list, with encounters with Sooty and Sweep, footballer Harry Kane, Santa Claus and racing driver Lewis Hamilton, a visit to the Tipping Point TV studio, and the chance to be a policeman and a fireman getting top billing.
Launched on Sunday evening, the family has already been "overwhelmed with love".
Twelve wishes have been pledged already, while donors have given more than £13,000 towards a wishes cash pot.
Dad Alex, a 35-year-old heating engineer, said: "People have been incredibly kind. It's been surreal and we are still trying to process it all.
"The fact we have been in lockdown pretty much since knowing, has actually given us a precious time to be together as a family and now we feel we are ready to share our story, but it has also made us take a big gulp, realising this is really happening."
Oscar was diagnosed with autism and ADHD previously, and is gradually losing his sight - all conditions his family originally thought were separate but are actually signs of the disease.
He is starting to experience difficulties with swallowing so will soon undergo an operation to fit a feeding tube.
In a video message, mum Dani joins Alex to explain the awful moment they found out what was wrong with their 'beautiful Oscar.'
"It's a neurological disorder that affects the brain. Childhood dementia is what they said to us...that day, knowing those things were going to happen, our world ended. Or it felt like our world ended. It was crushing.
"At the end of it I asked them the question: 'will he die from this?' They answered me 'yes'.
"I wasn't expecting them to say yes...I thought they would say no, we will just deal with it, his life will be different...but they said yes.
"Then the next question was: 'how long.' Bear in mind Oscar is eight now. They said he may make it to his early teens.
"No parent should hear those words," says Dani.
Keeping a blog and sharing videos of their experiences with the world is cathartic for them both, said Alex.
"We are finding it is helping us deal with everything. We want to continue this and create a legacy for Oscar.
"If it can also help anyone else finding things difficult, that will be great; if we can bring a little bit of Oscar, a ray of sunshine, into people's lives that's what we will do."
"We are trying to live in the moment, and not look too far ahead. This is helping us enormously.
Dani added: "We know how loved Oscar is...he walks into a room and has a huge impact on everyone - we want to share our highs and lows and memory making. We don't have loads of time with Oscar but the time we do have, it has to be positive and fun and make memories."
A Gofundme page has been launched by the family to help cover the costs of adventures, alongside the bucket list of moments that money can't buy.
Aunties Danne and Laura, who set it up, said of their nephew: "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 number of times we have heard Oscar complain about anything.
"A cousin of his 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."
Alex, who runs his own heating company Strysen Heating Ltd in Sutton Coldfield, said: "We have created the list, with input from Oscar.
"Because of his autism he tends to develop obsessions with certain people - so any mention of football he asks about Harry Kane, is Harry Kane playing...it's also why the idea of him and his little brother being mascots for England would be so amazing.
"Lewis Hamilton is his favourite as he loves the noise and the cars going round and round the track, he finds it calming.
"And he adores Tipping Point, he pretends he is a contestant and has pretend conversations with Ben Shephard (host of Tipping Point), and he has very strong opinions about game playing etiquette and whether or not people should take the offer at the end.
"We also always wanted to take him to Florida before he lost his mobility and speech."
"Sooty and Sweep, and the kids' show Swashbuckle, are some of his favourites.
"To be honest, we are doing this for Oscar but the memories are also for us and for Charlie, his little brother. He is only four, and so will be living through all this, and we want him to have wonderful memories of his big brother."
The family will one day have to also get little Charlie tested for the disease, who faces a one in four chance of having the same condition, but for now, while he displays no symptoms, they want to savour what they have.
