The family of an eight year old boy who has a rare life-limiting disease have launched a campaign to give him the best birthday ever.
Oscar Jealous from Great Barr will be nine on Sunday, November 15 and his parents had hoped to throw him a massive birthday party – but cannot because of lockdown.
Instead they are trying to get as many people as possible to send him a birthday card. So far more than 300 cards and 20 presents have been sent and more are expected in the coming days.
And they are appealing for members of the public to help them bring Oscar joy by posting him a card.
Oscar, from Great Barr, was diagnosed just before lockdown with Batten’s Disease, a neuro-degenerative 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.
It is extremely rare and most sufferers do not live beyond five years old.
Parents, Alex and Dani Jealous, who also have another son Charlie, aged five, 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.
In May they launched a bucket list which included meeting 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.
Now they want to give him a birthday to remember.
Alex, aged 36, who runs his own heating engineer firm in Four Oaks, Sutton Coldfield, said: “Every birthday is going to be different from now on and the reality is we have to make them as special as possible because we don’t know where we will be this time next year.
“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.
“So this year we wanted to go the extra mile and are asking as many people as possible to send him a birthday card.
“We originally wanted to throw the biggest birthday party ever, but can’t for obvious reasons so instead decided to make it a birthday to remember with lots of cards and smiles.”
The family’s house is currently a building site while work to convert it to meet Oscar’s needs is being carried out and the family are having to live upstairs. They’ve had a small Government grant to help with the building work, but are also having to use up every penny of their savings.
Although he is still attending Priestley Smith School in Perry Barr, Oscar’s health is deteriorating and he’s gradually losing his sight, is having frequent seizures and has also lost the ability to swallow and has had to have a feeding tube fitted.
His mum, Dani, aged 33, a shipping clerk, explained shortly after the devastating diagnosis how it was a neurological disorder that affected the brain.
“Childhood dementia is what they said to us that day and knowing those things were going to happen, our world ended. Or it felt like our world ended. It was crushing,” she said.
“At the end of it I asked the doctors 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.”
She said they asked doctors how long Oscar had left and were given the heartbreaking prediction that he “may make it to his early teens”.
The family said Oscar was “their little superstar” who lit up a room when he walked into it. Their campaign had been given the name ” Be More Oscar ” because one of his cousins once used that expression when describing how everyone should look at life in the same upbeat and positive way Oscar does.
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.
Alex said although most of the bucket list had now been fulfilled, the pandemic had meant many wishes had had to be put on hold until restrictions were lifted.
The family will one day have to also get Charlie tested for the disease as he faces a one in four chance of having the same condition, but for now he displays no symptoms.
Oscar’s birthday cards and presents can be sent to 759 Kingstanding Road, Kingstanding, Birmingham B44 9RJ.