'We don't know what the next day will hold': The Howdon boy who has baffled medical experts

18-month-old Milo Browne from North Tyneside has an illness so unique it may one day be named after him

Milo Browne with mother Laura and dad Stephen
Milo Browne with mother Laura and dad Stephen

Little Milo Browne has a condition that has baffled the medical world.

The youngster has an illness that is so unique there is no diagnosis as it has never been seen before by health specialists.

Milo, of Howdon, North Tyneside, has a variety of complex needs that has resulted in delayed mental and physical development.

The 18-month-old has no head control, suffers from uncoordinated movements, and is unable to hold his body weight. It is thought that he may never be able to walk or fully talk.

Mother Laura Davidson, 29, said: “It was heartbreaking to be told that Milo may never walk.

“All the tests that have been done on him have come back clear and doctors have no idea what is wrong.

“It’s hard not to have an official diagnosis as we have no-one to compare Milo with and therefore do not know what the future will hold for him.”

Parents Laura and Stephen Browne, 28, first realised there was a problem when a pregnancy scan identified there was an abnormality with the umbilical cord.

Medics suggested Milo could have Edward’s syndrome, a genetic condition that disrupts a baby’s normal course of development, yet that proved unfounded when he was born.

However, when he was just a day old, Laura became concerned that all was not right as her newborn baby was not moving in a way that was expected.

Laura noticed Milo’s arms and legs were “very jerky”, but because it had been a fast labour it was suggested that he might be in shock and his uncoordinated movements would settle down.

Sadly they did not, and throughout his short life Milo has undergone many scans, tests and examinations to rule out a number of medical problems, including chromosome disorders.

Laura added: “Anyone who looks at Milo thinks he looks fine and that nothing is the matter.

“Yet we don’t know what the next day will hold or what the next two years will hold as his condition is undiagnosed. We would definitely like to know what the problem is.

“Milo is a very, very happy and sociable little boy, but he does not grasp for toys and has no interest in toys.

“Christmas can be emotional as Milo should be running around the living room, ripping the paper off his presents like other children his age.”

Consultants at Newcastle’s Great North Children’s Hospital have been left stumped by the youngster’s condition and may never establish a diagnosis, which could lead to it being dubbed ‘Milo’s syndrome’.

Milo has had eye tests, heart checks, hearing examinations, as well as muscle and skin biopsies, MRI scans and ECGs.

The nearest there has been to a diagnosis was when it was suggested he could have beta-ketothiolase deficiency, a rare condition which impairs the body’s ability to breakdown fat.

But recent results of a skin biopsy that was sent to experts in Switzerland came back negative and, it was once again, back to the drawing board for medics.

Dr Mark Anderson, consultant peadiatrician at the Great North Children’s Hospital, said: “It is quite unusual to not have a diagnosis for a patient.

“With Milo we do not have any particular pointers in terms of a diagnosis and all investigations have come back normal with no real suggestion as to what is going on.

“It is a bit of a mystery to us at the moment and we have engaged the brains of a number of specialists at the Great North Children’s Hospital.

“Finding a diagnosis is not going to change anything, or what we would do for Milo. But having a diagnosis can be useful for patients and families to get an idea of what to expect in the future.”

Milo, who has brother Felix, two-and-a-half, and half-sister, Mia, six, may be asked to take part in research studies with the aim of further understanding his condition.

As he gets older, there is also a possibility that he could present with medical issues that help point to a particular diagnosis.

Laura said: “Milo is very, very tactile and he loves touches, tickles and kisses. He is very laid back and the only time he cries is when he’s poorly.”

Milo continues to be monitored by specialists and undergoes weekly physiotherapy sessions to help with his development.

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