2022 Winner
OSCAR JEALOUS
Terminally-ill schoolboy inspires others as he keeps smiling through his battle with devastating Batten Disease.
Oscar was diagnosed with degenerative neurological condition, Batten Disease, just before the first lockdown in 2020. The disease affects his nervous system and sufferers slowly lose their sight and motor skills.
Mum Dani said: “Oscar met all his milestones and was reading by the age of three. We genuinely thought we had a little Einstein because he was a genius child. He also played football and tennis twice a week.
“In reception, he started wearing glasses but when he got to the age of six or seven, we began to see changes in his learning, he wasn’t picking things up as well.” Oscar was referred to Great Ormond Street Hospital where doctors revealed he had the incurable condition.
As Dani explains: “It turned our world upside down, we were genuinely broken. It felt like someone had ripped my heart out, stomped it to pieces and that it couldn’t fit back in.” There is no cure for Batten disease and Oscar, ten, has developed epilepsy and lost his ability to swallow so needs a gastric feeding tube. Symptoms get worse over time and might include cognitive impairment, worsening seizures, and progressive loss of sight and motor skills.
Since his diagnosis two years ago, his family have been determined to make the most of the time he has left and have created a bucket list for him, which Dani is documenting on a Facebook page called BeMoreOscar. A family member inspired the title, saying everyone should look at life in a positive, upbeat way, the way Oscar does.
People have been so touched by his journey that they have contributed to an appeal, set up to support his family and fund the practical equipment he needs as his condition deteriorates.