£100k appeal to help fund treatment for Bedford boy’s brain injury

Raj Nerr & Jaydan
Raj Nerr & Jaydan

The family of a 12-year-old boy are hoping to raise £100,000 to fund treatment for their son’s rare brain tumour only available in Texas, USA.

Jaydan Nerr suffers with a rare condition, Hypothalmic Hamartoma, which was diagnosed in 2008, when he was just eight years old.

As a result he suffers up to 10 epileptic seizures every day and takes a cocktail of strong drugs.

He is being treated at Great Ormond Street Hospital which applied for funding to pay for the specialist treatment in America.

But the family were devastated when funding for treatment was turned down and set up a JustGiving page to try to raise the money themselves.

Jaydan’s dad Raj said: “We were told last November that the application for the NHS to fund Jaydan’s trip to Texas to get access to the only curable treatment was rejected.

“But we know the treatment has been successful for another boy with the same condition who is now seizure free, so we’re very confident it will work for Jaydan too.

“It would make a such a difference to his life. He is going back to Bedford Free School, where he gets lots of help and educational support.

“But he suffers these seizures daily and they can result in him causing injury to himself.

“He’s also been diagnosed with autism ADHD and ODD which are all linked to the condition.”

Raj, of Eastcotts Road, Bedford, said the appeal had already raised £9,375.

And he extended thanks to everyone who had pledged donations: Raj added on the JustGiving page:“The news has given us renewed HOPE, a chance for our Jaydan to be cured, to live a normal life and do the things all other kids do.

“So we are asking people to open their hearts and help give our son a chance of being seizure free and to live a normal life.” To help visit Jaydan’s JustGiving page www.
justgiving.com/crowdfunding/jaydan-nerr