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A MOTHER, who thought her son needed glasses, recounted her grief when doctors diagnosed her with a life-changing illness.

Just before the lockdown, jealous 9-year-old Oscar was diagnosed with rare Batten disease – an incurable disease that often means sufferers slowly lose sight and motor skills.


Mother shared how her son was diagnosed with Batten diseaseCredit: Getty

Some early signs can be subtle and include changes in personality or behavior such as slow learning, clumsiness, or stumbling.

But the symptoms of the Oscars came on hard and quickly – from when his mother thought he might need reading glasses.

His mother, Dani, told BirminghamLive: “Oscar hit all of his goals and was reading by the age of three.

“We sincerely thought we had a little Einstein because he was such a genius kid. He also played football and tennis twice a week.

“At reception he started to wear glasses, but when he was six or seven we started to see changes in his learning, he didn’t understand as well.

In August 2019, he was diagnosed with retinal dystrophy after doctors discovered he had cysts behind his eyes.

When he was 17, his family learned he would be visually impaired, but by December of the same year, the young boy lost his sight.

He was referred to Great Ormond Street Hospital and in February 2020, he was diagnosed with Batten disease.

“It turned our world upside down, we were really broken.

“It was as if someone had ripped my heart out, crushed it to pieces and couldn’t fit in anymore.”

There is no cure to reverse the symptoms of Batten disease and since being diagnosed he has developed epilepsy.

Now his motor skills are failing and he has lost his ability to swallow, so he now has a gastric feeding tube.

Symptoms worsen over time and may include cognitive impairment, worsening seizures, and progressive loss of sight and motor skills.

What is Batten disease?

Latte disease, otherwise known as neuronal ceroid lipofuscinosis, is a fatal disease that affects the nervous system.

The condition, which usually begins in childhood, can manifest as vision problems and seizures.

It can then worsen, children suffering from cognitive impairment, worsening seizures and a progressive loss of sight and motor skills.

It is often fatal in the late teens or early twenties.

According to BDFA UK, around 1 in 3 children are diagnosed with an infantile form of the disease each year, which means there are likely between 15 and 30 children affected in the UK.

There are other variants of the genetic disease, with 14 strains diagnosed to date.

There is currently no cure

Later in the disease, children become blind and suffer from dementia, and people with latte disease will usually die in their late teens or twenties.

Dani continued, “We don’t know how much time we have with Oscar, as most children lose their battle with this deadly disease as a teenager.

She added: “Throughout the progression of Oscar’s disease and all the things he has to go through, he rarely complains and manages to smile.

“His little cousin once used the phrase ‘Be More Oscar’ to describe how we should all view life in a positive, upbeat, Oscar-style way.

“It couldn’t be more fitting, so now we look to Oscar for inspiration and strive to be more Oscar.”

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