Queensbury dad to ascend Mount Kilimanjaro for son with rare epilepsy

Oscar Newsholme, four, was diagnosed with West Syndrome when he was 10 weeks old, which is characterised by infantile spasms - with most children then going on to have other kinds of seizures in later childhood.

His devoted dad Jon Newsholme, 30, from West Dean Close, spoke about the difficulties of juggling his key-worker life, whilst also providing support for his epileptic son, Oscar, his twin children Jacob and Grace, and his wife.

Mr Newsholme, who works for Yorkshire Water, said: "It's been difficult during lockdown because I'm a key worker.

"Oscar's immune system was shot to bits just before lockdown started, so he was put on a high dose of steroids to help ease his seizures.

"However, my wife, Hannah (30), is his full-time carer and usually she is visited by her mum, but because of coronavirus, it's been a very lonely time for her.

"Isolation, coupled with looking after our three children, has not been easy for her.

"Oscar is non-mobile too, and we haven't been able to have anyone round to help us with his specialised equipment."

Mr Newsholme said his son has recently been diagnosed with the epilepsy syndrome Lennox-Gastaut, which is difficult to treat.

Oscar suffers with seven to 12 seizures a day, and his dad said the last time he had a seizure-free day was on Christmas Day way back in 2016.

"With everything my son goes through everyday, I try to raise as much money for Epilepsy Action by doing the annual Bradford 10k run," said Mr Newsholme.

"As part of the Epilepsy Action charity, I've signed up to climb Mount Kilimanjaro starting in September next year.

"For this I'm raising a target of £5,000 through GoFundMe for the charity.

"I don't like asking people for money especially during these hard times, but this money won't directly help my family, but it will increase valuable research into epilepsy."

One aspect of research into the Lennox-Gastaut syndrome is the utilisation of medicinal cannabis, which Oscar now qualifies for.

Lennox-Gastaut syndrome on average occurs in between one and five in every 100 children with epilepsy, and the condition effects the child's development and his ability to crawl, walk or talk.

On the GoFundMepage, Mr Newsholme said: “He will hopefully be starting a trial with a new medication and treatment in August 2020, once we have sorted out the volume and concentration of the various medications he is already on, which fingers crossed will have the desired effect on his seizures.

"He's overcome so many obstacles already and we're not going to stop now. We will keep fighting for a seizure free day, for now seeing his infectious smile and knowing his happy is the most important factor to us.”

Mount Kilimanjaro, in Tanzania, is Africa’s tallest mountain and the world’s largest free-standing mountain.

You can donate to Jon’s fundraising mission by visiting the JustGiving page, click here.