A DOTING dad is to climb majestic Mount Kilimanjaro in a fundraising trek for a charity which helps people living with epilepsy.

It’s a personal mission for Jon Newsholme, from Queensbury, whose son, Oscar, has a rare epilepsy syndrome.

Now four, the adorable tot was diagnosed with epilepsy at just 10 weeks old after he started having seizures and it was found he had West Syndrome.

This is characterised by infantile spasms and most children then go on to have other kinds of seizures in later childhood, including the epilepsy syndrome Lennox-Gastaut, what Oscar has recently been diagnosed with, and which is difficult to treat.

It only tends to occur in between one and five in every 100 children with epilepsy. 
The condition has impacted Oscar’s development and his ability to crawl, walk or talk. He can have a number of seizures per day.

Jon said it was initially a “hammer blow” for he and his wife Hannah, particularly as Oscar was their first child, but said: “You don’t really know what to do, but you learn to live with it. 

“It’s life, you’ve just got to get on with it - you can’t sit there and think ‘why us?’
“You learn to live with it.”

He added: “We try and look for the positives.

“The most important thing for us is that he’s happy.”

And while the couple, who also have twins Jacob and Grace, don’t know what the future holds, Jon said they celebrate every little milestone that Oscar, with his “infectious smile” makes.

Earlier this year, Oscar had a scan on his brain, which found he was having constant seizure activity while he was asleep.

To try and combat this, he was put on a high dose of steroids, which did have an impact for the first two to three weeks and the couple got their “happy Oscar” back.

But they then stopped working as efficiently and specialists found Oscar is having epileptic activity most of the time he is awake, and while he is asleep. 
Jon, who works for Yorkshire Water, wrote on his JustGiving page: “After various consultations through April and May with epilepsy specialist consultants in Halifax and Leeds and starting a new medication, they finally diagnosed him with a variant of epilepsy syndrome Lennox-Gastaut.  A rare type of epilepsy. 

“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 added: “He has overcome so many obstacles already and we are not going to stop now we will keep fighting for a seizure free day, for now seeing his infectious smile and knowing he is happy is the most important factor to us.”

Jon has set a target of £5,000 for Epilepsy Action, which advise and campaigns to help improve the lives of people with epilepsy, and has already raised a significant amount towards that goal.

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

He will set off on the trip in September next year, and admits it will be “one hell of a challenge”. 

“I’ve done the Epilepsy Action 10k a few times and raised a bit of money on the back of that, I thought it was time to do something a bit bigger,” Jon said.

“I can’t wait, I’m really looking forward to it.” 

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