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How you can help this 10-year-old Donald Duck fan with uncontrollable seizures get to Disneyland

The mum of a 10-year-old Donald Duck fan whose rare genetic condition triggers up to 200 seizures hopes he can one day visit Disneyland.

Jack Power, from West Wickham, Cambridgeshire, has coped with relentless seizures his entire life after being diagnosed with tuberous sclerosis complex shortly after birth.

The condition has left Jack non-verbal, reliant on round-the-clock care and with a development level of a nine to 18-month-old child.

Disney cartoons are one of the few things that light up Jack's eyes and now family friends are fundraising to send him on a trip of his dreams.

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Inspiring people

'They've never been able to get his seizures under control'

When Jack was just 12 weeks old his parents, Natasha, 37, and Mike, 38, noticed all was not well.

He was quiet and "zoned out" with unusually brief twitching on the side of his body that lasted a few seconds.

Tests by doctors delivered the diagnosis that would change the couple's lives forever.

Jack was diagnosed with the severe genetic condition at an early age (Image: Natasha Power)

Jack hastuberous sclerosis complex (TS), a rare condition which hit the young boy particularly severely.

It causes non cancerous tumours to grow in organs including the brain, skin, kidneys, heart, eyes and lungs.

Widespread inoperable tumours were found in Jack's brain, causing epilepsy, severe learning difficulties and seizures.

The epilepsy causes weakness in the right side of his body. On good days he is mobile and can walk but the seizures at their worst can mean he can barely sit in his special chair, hold his head up or chew, meaning food is puréed.

A younger Jack being helped to stand (Image: Natasha Power)

"They've never been able to get his seizures under control," explained Natasha who cares for Jack at home.

"They affect his overall development. Some days he can walk with assistance, other days he isn't able to sit and hold his head up.

"Any little thing like illnesses, growing, can set his seizures off and make them worse. We often have to call an ambulance.

"We will be sitting and his head will just go in a split second. He can do that almost constantly.

"On one day we counted, it was 200. It was just ridiculous.

"He has the risk of having a seizure in his sleep and perhaps the worst happening. It's a constant worry."

'We know we have given him 110 per cent all the way'

Power Up! campaign. Mike and Natasha Power. (Image: David Johnson)

One tumour in his brain presented differently and when he was 2-years-old it was confirmed as a subependymal giant cell astrocytoma or SEGA.

In June 2014 he had most of this removed as it had become the size of a medium egg and was life threatening.

He has regular MRI scans to make sure the two remaining pieces too risky to remove are not growing.

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The severity of Jack's condition has meant that Natasha has been unable to hold down a job and provides round-the-clock care to her son.

"You don't start really planning anything or thinking about much else. You do what you need to do to make it through the day," she explained.

"That's what's hard about his condition. You don't know what you're going to get from him.

"Every decision we make in life revolves around Jack and his diagnosis.

"You feel like your life, it's on hold, but you don't mind because it's all for Jack."

Jack in hospital (Image: Natasha Power)

Natasha admits that life caring for Jack can be challenging but decided early on that she was going to give everything to the son she loves.

"I said there on the hospital ward if I don't accept my son then how is anyone else going to accept him?" she said.

"Then I realised I was going to focus on who he was, what he can and can't do, but more can.

"It's about making sure that we don't miss any day with him. I don't want to get to a day when the worst happens and regret that you didn't do something.

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"There's days when you hate the TS. You hate the choices you have to make because its right for him.

"We know we have given him 110 per cent all the way, that's what matters.

"There's been days when we've had complete meltdowns and it's hard, but you come through the other side and you carry on."

'He's one in a million'

Jack (centre) and his family (Image: Natasha Power)

Despite his hardships, Jack has proven to be a resilient and happy boy who his adored by his mum.

"He's completely and utterly amazing to go through what he goes through," Natasha said.

"He will try to sit and try to stand. He doesn't give in. How he does it I don't know. His body can be completely exhausted.

"He's the happiest, most easy going little boy you will ever meet.

"I'm completely inspired by him. He doesn't let anything stop him. He always tries his best. He's one in a million."

'We need to make a few more memories'

Jack's frequent seizures means ambulances often need to be called (Image: Natasha Power)

Recently Jack's parents learnt of another young child with TS sadly passing away and it had a profound impact on how they saw the future.

Natasha and Mike spent months fundraising for a new bedroom and wet room for their son Jack in 2016, but now want to bring him unique happy memories.

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"When you realise it does happen and it can happen we need to make a few more memories," Natasha explained.

"It's hard dealing with it on a daily basis, balancing being sensible and meeting Jack's needs and doing something that will give him more opportunities."

The whole family together in 2016. From left: Faye, Mike, Harrison, Natasha and Jack (Image: David Johnson)

Jack's mum often finds it hard watching Jack being unable to join in playing with his 7-year-old brother Harrison and 2-year-old sister Faye.

She said: "You want to do some of the things that he enjoys and see more than the four walls and bringing the extra depth to his life.

"There's so many things they do and Jack can't join in. He's sat in a wheelchair and not getting as much out of it."

'His face says a thousand words when he recognises something'

Jack is a huge Disney fan (Image: Natasha Power)

Watching Disney cartoons and football are two things that bring particular joy to Jack.

"He loves Donald. He's always had a really fond connection to Donald Duck," Natasha said.

"He doesn't really recognise a lot on TV other than Mickey and football.

"If Mickey comes on he will look up and pay attention. He's got all the toys."

Natasha said taking Jack to Disneyland would "mean the world" to his whole family.

"His face says a thousand words when he recognises something," she explained.

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"I think it would mean the world to all of use to be able to do something for him as a family and escape from our daily life and the seizures and the sleepless nights when you're checking on him.

"He's not going to have a life like his brother and sister are going to have, but to know that he's been able to enjoy something, it's hard to put into words what it would mean."

Family friend Rachel McKenzie, whose own son Max has been through drastic brain tumour surgery, set up the fundraising page for Jack to raise £3,000 to send him to Disneyland.

"Since Max was first diagnosed he turned to us and said he all he wants to do is help others," Rachel explained.

"He really wants to raise enough to be able to send Jack and his family as he knows how precious memories are.

"They are both the same age and Max actually went into Jack's bed at Addenbrooke's when they both had their brain tumour removed in 2014."

So far Max has raised £10,000 for children's charity the Liam Fairhurst Foundation.

He is holding a charity ball on July 7 to help fundraise for Jack's Disney trip.

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