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He's a miracle! Boy missing 20% of his brain survives against all odds

PUBLISHED: 20:39 14 May 2019 | UPDATED: 20:39 14 May 2019

Amanda Harvey  and Orrett Daley with their son Kaiden Daley  Picture: SARAH LUCY BROWN

Amanda Harvey and Orrett Daley with their son Kaiden Daley Picture: SARAH LUCY BROWN

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He has a rare condition which means 20% of his brain is missing - yet to his family, Kaiden Daley is a "miracle" boy for surviving against all the odds.

MRI images of Kaiden Daley's head shows significant parts of his brain missing signified by areas discoloured either bright white or dark grey. Picture: ORRETT DALEYMRI images of Kaiden Daley's head shows significant parts of his brain missing signified by areas discoloured either bright white or dark grey. Picture: ORRETT DALEY

Despite a difficult birth, the youngster from Ipswich began life well - with relatives unaware of the problems he was living with.

But a fit which Kaiden suffered when he was just eight months old revealed something which took doctors and Kaiden's family by complete surprise.

After being rushed into hospital, doctors ran a range of tests - where by chance they discovered a large section of his brain of missing.

Shocking brain scans show a huge area which is missing, extending from the front of the skull right to the back.

Amanda Harvey  and Orrett Daley with their son Kaiden Daley  Picture: SARAH LUCY BROWNAmanda Harvey and Orrett Daley with their son Kaiden Daley Picture: SARAH LUCY BROWN

Missing such a crucial part of the brain has caused 14-month-old Kaiden to have right side hemiplegia, which restricts his movement down his right-hand side.

However his mum Amanda Harvey, 44, said: "For him to even be able to do what he can do now is a miracle considering how much of his brain he is missing."

-Donate to Kaiden's cause here

As she embarks on a fundraising campaign to raise £7,000 for expensive treatment not available on the NHS to help improve his condition, she said: "When he first had a seizure, we didn't know what it was.

"I was just feeding him a bottle of milk at 5.30am and he went floppy. He doesn't really fit, he just goes limp and floppy and his eyes roll.

Amanda Harvey  and Orrett Daley with their son Kaiden Daley  Picture: SARAH LUCY BROWNAmanda Harvey and Orrett Daley with their son Kaiden Daley Picture: SARAH LUCY BROWN

"It was awful to watch him fit for the first time and it still is absolutely awful.

"He stayed in hospital and he went through loads of tests including an MRI on his brain, and that's when they noticed the issues."

Because of Kaiden's age, it is not yet possible to determine just how much of an impact missing 20% of his brain will have on his life.

But Miss Harvey said: "We are finding more illnesses as Kaiden gets older."

Amanda Harvey  and Orrett Daley with their son Kaiden Daley  Picture: SARAH LUCY BROWNAmanda Harvey and Orrett Daley with their son Kaiden Daley Picture: SARAH LUCY BROWN

He has suffered five epileptic fits since September and is a regular at Ipswich Hospital, as well as Addenbrooke's Hospital in Cambridge.

The 14-month-old cannot crawl or walk and his right arm is nearly completely seized, forcing him to reach for toys and food with his left.

His toes on his right foot are clenched, which makes it difficult for him to begin to walk and his right leg is very stiff.

However doctors say the fact Kaiden is able to do so much with such a severe condition shows there are positive signs.

"His consultant keeps saying it is amazing and they think he is going to be very intelligent," said Miss Harvey.

"I know it sounds weird as he has got part of his brain missing but he still is very aware and very nosey.

"The only time it really hurts me is when his friends are off running around and playing and he can't do that yet. That's quite sad to see.

"He is such a chatty, social little boy and he sees them toddling about and wonders why he can't do that."

The family now have big plans to take Kaiden to Manchester so he can go through specialist therapy to promote movement in his right arm.

The treatment would restrict Kaiden's usage of his good arm so that he learns how to use his other working three hours a day on specialised activities.

The intensive treatment would see the family move up to the northern city for a month while Kaiden goes through the treatment five days a week.

Case studies of other children with similar illnesses who have shown vast improvements after going through the treatment, giving the couple hope.

They have just set up a donations page to try and raise the £7,000 needed to pay for the treatment.

Within the first two days, Kaiden's cause has raised over £1,300, the equivalent to 20% of their the amount needed for the vital treatment.

Mr Daley said: "The treatment is called CIMT which stands for constraint induced movement therapy.

"He will never be able to use his arm perfectly, but at the moment he cannot dress him self or eat and those little improvements will help a lot as he gets older and hopefully gets more independent.

"We would be so grateful to anyone who can donate any money to help us. We have been so happy with the response we have had so far."

The couple are hoping to be booking in for treatment this summer and any donations can be made here.

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