A MOTHER, who thought her son needed glasses, has told of her heartbreak when doctors diagnosed him with a life-changing condition.
Oscar Jealous, a 9-year-old boy from Texas was diagnosed with Batten disease. This incurable condition often causes blindness and impairments to motor skills.
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Some early signs can be subtle and include personality or behaviour changes like slow learning, clumsiness or stumbling.
Oscar’s symptoms started when his mother thought that he may need to wear glasses.
His mum Dani told BirminghamLive: “Oscar met all his milestones and was reading by the age of three.
He was truly a genius child and we thought he was Einstein. He played tennis and football 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.”
He was diagnosed with retinal Dystrophy in August 2019, after doctors discovered he had cysts behind both his eyes.
His family were told by the time he turned 17 he would be partially sighted – but by December that year the young lad had lost his vision.
He was referred at Great Ormond Street Hospital where he was diagnosed in February 2020 with Batten Disease.
“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 to reverse the symptoms of Batten disease and since he was diagnosed he has developed epilepsy.
His motor skills have deteriorated and he is unable to swallow properly. He now uses a gastric tube.
The symptoms can get worse over time, including cognitive impairment, worsening seizures, progressive loss of vision and motor skills.
What is Batten Disease?
Batten disease, otherwise known as Neuronal Ceroid Lipofuscinoses, is a fatal disorder that affects the nervous system.
This condition can cause vision problems or seizures and usually begins in childhood.
Children can suffer from cognitive impairment, worsening seizure, progressive loss of vision and motor skills, as well as cognitive impairment.
It can be fatal by the time you reach your twenties or early twenties.
According to BDFA UK, an estimated 1 – 3 children are diagnosed with an infantile form of the disease each year, meaning there are probably between 15 and 30 affected children in the UK.
There are many other forms of the genetic disorder, and 14 have been identified.
There is currently no cure
Later on in the disease, children become blind and get dementia and batten disease suffers will typically die by their late teens or twenties.
Dani continued: “We don’t know how long we have with Oscar as most children lose their battle with this life-limiting disease in their teenage years.
She continued: “Despite Oscar’s progressing illness and all the difficulties he faces, he never complains and always manages to smile.
“His second cousin 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.
“This couldn’t be more fitting, so now we look to Oscar for inspiration and strive to Be More Oscar.”