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‘He is a mystery to everyone’ Fund launched to support Belton youngster who has medics baffled

PUBLISHED: 16:22 29 March 2015

Tamara Miller with her young son Harry.
Harry suffers a range of problems but his condition remains undiagnosed.
A charity golf tournament is raising money for sensory lights to help stimulate him.

Picture: James Bass

Tamara Miller with her young son Harry. Harry suffers a range of problems but his condition remains undiagnosed. A charity golf tournament is raising money for sensory lights to help stimulate him. Picture: James Bass

Archant Norfolk © 2015

He seemed like the perfect baby - never any trouble, sleeping soundly and with a quiet, undemanding cry.

Tamara Miller with her four children, Troy, Courtney, Lilly and Harry.
Harry suffers a range of problems but his condition remains undiagnosed.
A charity golf tournament is raising money for sensory lights to help stimulate him.

Picture: James BassTamara Miller with her four children, Troy, Courtney, Lilly and Harry. Harry suffers a range of problems but his condition remains undiagnosed. A charity golf tournament is raising money for sensory lights to help stimulate him. Picture: James Bass

But after a few months his mother Tamara Miller, 27, began to think things were not quite right with her placid little boy.

Unlike her other three children baby Harry was failing to thrive, unusually floppy and with little muscle tone or strength.

Now at the age of two and half he has a host of undiagnosed problems that are mystifying medics.

“When he was born everything seemed fine,” Mrs Miller said. “It was more of a mother’s instinct. Harry is my fourth child and he never seemed to have the muscle tone and could not hold his head up. At the beginning they thought it was just allergies then at eight months he had to have a tube fitted because he could not get enough nutrition.”

Now, although he has been identified as having complex needs doctors remain baffled by his condition.

Mrs Miller, who lives with her taxi-driver husband Kevin in Bracken Road, Belton, said his problems had taken their toll on the whole family with the other children aged nine, seven and four at a loss to understand why Harry wasn’t doing everything he should be at his age.

Meanwhile doctors are unsure about which path to take having already submitted the child to string of exhaustive scans, tests and explorations.

“I have no answers for the children which is heart-breaking,” Mrs Miller said, adding: “He is a proper mystery to everyone. Doctors say they have never come across a case like Harry and they have nothing to compare him to. It took a while to accept he is not an average little boy and we have to accept that Harry may not be here forever. But as long as we make sure every day he has is a happy day then that is what we go for. Once we know what we are dealing with it will be easier to get our heads round it.”

Harry is non-mobile and cannot sit up. He has hypotonia and hypermobility of all his joints, he also has global development delay.

Harry is unable to sit unaided, walk or talk.

Although he can’t talk he laughs at the other children and can say “ta.”

Meanwhile physiotherapy is bringing limited improvements and speech and language experts are encouraging him to sign.

Harry is also involved in a genetics-based study being carried out at Addenbrooke’s Hospital, Cambridge.

• Golfers are teeing off to raise money for sensory equipment to stimulate Harry who enjoys looking at lights. The 2nd Oaklands Charity Waltz is taking place on Sunday May 10 at Caldecott Hall near Fritton. Teams of four are invited to take part. Entry including a bar meal is £10 members, £20 non-members.

To find out more contact Ian Walker on 07887 640385.

The Harry Miller Fund also has an online donation page at http://de.gofund.me/p64js4

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