Mya's battle from birth with unique condition

Caring for a disabled child is challenging at the best of times, but living without a definite diagnosis can sometimes make the situation all the more daunting, as VICKY ROBSON discovers.

Mya Simpson with parents Shaun and Marina of North Seaon, Ashington

TO HER doting parents, little Mya Simpson is one of a kind. At three-years-old, she needs round the clock care after being born with a series of severe abnormalities.

The daily routine has become relentless for her mum and dad, Shaun and Marina, who now struggle just to carry her down the stairs each morning, and the couple are now hoping to raise more than £40,000 needed to modify their home for Mya.

“After numerous tests, including some quite painful lumbar punctures, she was diagnosed as having probable Infantile Parkinson’s,” explains Shaun, of Ashington, in Northumberland.

The suspected diagnosis, also known as TH deficiency, was suggested at a conference when a video of Mya, taken by a neurologist, was shown to a group of specialists.

It came after numerous tests failed to detect any specific disorder, instead revealing ‘normal’ results.

While other cases of the condition are known, Shaun and Marina have been told that Mya may be alone in having actually been born with Infantile Parkinson’s.

“Mya is unable to make her muscles move the way normal children do, she is unable to sit unaided and can’t walk.

“She had to have a tracheotomy fitted when she was just a few months old, so regularly requires suctioning to enable her to breathe.

“Mya also has no swallow or gag reflex and is unable to smile like other children,” says Shaun, a postman.

Shaun, 42, and Marina, 38, of North Seaton, were overjoyed when they discovered they were expecting a baby girl.

And after an uncomplicated pregnancy, they had no serious concerns, although Marina had mentioned throughout that she hadn’t felt Mya move as much in the womb as her other son Brad, now 14.

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