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'Life-changing' therapy allows miracle boy to walk for first time

PUBLISHED: 05:37 28 October 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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A 'miracle boy' from Ipswich who is missing 20% of his brain has made remarkable improvements after taking part in an intense month long therapy session, drastically improving the movement in the right side of his body.

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

Kaiden Daley, aged 1, began to suffer from fits during the first few months of his life, confusing doctors until scans revealed that a large portion of his brain was missing.

Without a full diagnosis, Kaiden's parents, Amanda Harvey and Orrett Daley watched as he grew up with nearly a complete a lack of movement in the right side of his body, forcing him to crawl instead of walk.

After hearing about a drastic therapy which could change Kaiden's life, the family fundraised more than £7,000, allowing them to book a month in Manchester to complete the course.

Now after returning home after the potentially life-changing CIMT (constraint induced movement therapy), which restricted one side of Kaiden's body to increase movement in his weaker side, Kaiden can walk unaided and is happy to offer up a high five with his right hand.

Kaiden Daley has seen considerable improvement after receiving after specialist treatment. Picture: Victoria PertusaKaiden Daley has seen considerable improvement after receiving after specialist treatment. Picture: Victoria Pertusa

Miss Harvey, Kaiden's mum said: "I can't believe how brave he was. It was very intense. He did therapy two hours a day and it was very stressful and very emotional.

"I think he coped with it better than we did to be honest.

"I can't believe how quickly he was up on his feet and the staff worked really hard on his arm. It is such an amazing improvement."

Within the first week of therapy, Kaiden was up on two feet, dashing around the treatment room and now, despite walking with a limp, he can move between his toys without the help of his parents.

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

The therapists also put a cast around his left arm, and encouraged him to play and complete tasks with his right.

Despite still having restricted movement, he is now much happier with using his weaker hand to move around and balance with. "I can't tell you how good the staff were," said Miss Harvey.

"We just want to thank them, and everybody who helped raise the money which meant that we could go and give Kaiden the therapy. This is life-changing for Kaiden"

Ruth Greenall and her team at CIMT worked with Kaiden everyday testing his ability to use the right side of his body.

Amanda Sinclair and Kaiden Daley. Picture: Victoria PertusaAmanda Sinclair and Kaiden Daley. Picture: Victoria Pertusa

She said: "It was our pleasure to work with Kaiden. He is a busy boy and as he started walking when he was with us we really had to keep sessions active.

"His determination and perseverance to succeed was seen in therapy sessions every single day.

"Over Kaiden's 4 week programme he went from nearly 100% neglecting his right arm and hand to using it successfully within voluntary movements for example raising his arm to push a large ball or let a car down the ramp.

"Kaiden developed skills which will be so beneficial for him in doing two hand activities in the future, using his right hand as his assisting hand as an adult would do once they develop a hand preference.

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

"The intensive CIMT programme was greatly beneficial for Kaiden.

"His parents learnt a lot and worked hard out of his therapy sessions to help him to develop his right arm and hand function."

Now with a busy toddler to run after, the family have also received a full diagnosis for Kaiden which really does make him one of a kind.

A geneticist from Addenbrooke's Hospital has told the family that the 1 year old has a very rare gene mutation called COL4A1.

Kaiden Daley has seen considerable improvement after receiving after specialist treatment. Picture: Victoria PertusaKaiden Daley has seen considerable improvement after receiving after specialist treatment. Picture: Victoria Pertusa

He is one of only 50 people in the world, and is believed to be the only person in the UK to possess the mutation, which causes the capillaries in his brain to be much thinner than those in others, meaning he is at risk of having seizures and prone to head injuries.

Miss Harvey said: "He was always very special to us of course, but he really is one of a kind in Britain.

"We still don't really know what this mutation means for Kaiden. We have meetings with the geneticist scheduled so we can find that out.

"We know he will never be able to play football or rugby, no contact sports at all and we now know why he has been suffering from the fits he has been having.

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 is really nice to know exactly what it is.

"Now we can know what to do and make sure he has all his checks and make sure he is safe."

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