Contact Us

Rare Disorders of Childhood in the News: Schizencephaly in Two Articles - featured October 26, 2010

< Back to Previous Page

[Source: The Daily Mail]

A young boy who couldn't play in his garden due to a rare 'texture sensitive' reaction to grass is enjoying the outdoors again after well-wishers donated an artificial lawn. Harley Noble, four, has schizencephaly, a rare form of cerebral palsy known to affect just 70 people worldwide.

He suffers from extreme texture sensitivity, which means he is physically sick if he touches a single blade of grass. The youngster from north Wales suffers a similar reaction to fluff, hair and Play-Do.

His mother Christina Lace, 24, said: 'He's never been able to play outside on grass. But now he's got artificial turf he's absolutely loving it. 'He loves the rough and tumble of playing with his sister Lily, who is three. And being able crawl around on it and whizz round the garden in his powered wheelchair.'

Harley can't walk or talk, but is doing 'really well' at a mainstream school, and uses a touchscreen computer to communicate. Ms Lace said: 'When he was about a year old and a girl put a few blades of grass on the tray of his buggy. He pulled a face, dribbled and then he was physically sick.

'This texture sensitivity is associated with cerebral palsy, but Harley's consultants say they've never seen a reaction as extreme as this. 'The form of cerebral palsy he has is extremely rare. Only 70 people in the world have it and there is Type 1 band Type 2. Harley has both. We've not found anybody else who has both types.'

Christina and partner Jonathan Noble, 25, who works at a Toyota factory, are delighted with their new garden, and the new lease of life it's given Harley.

Read the Rest of this Article in the Daily Mail

[Source: The Irish Times]

SUZANNE MATTHEWS and her partner, Carl Brennan, know their one-year-old daughter Annie will not live to her second birthday. She was not expected to live to her current age and some nights, as she struggles to breathe, they wonder whether she will see the morning.

She has a rare neurological condition, schizencephaly, which means she has clefts, or holes, in her brain. She has cerebral palsy, is tiny for her age, is almost totally blind and is unable to sit up unaided.

She also has up to 50 severe seizures a day, each one of which makes the clefts bigger, the brain damage worse and brings death a little closer.

Sitting in her parents’ home in Skerries, north Co Dublin however, one can see there’s a little girl behind all that disability who feels pain and hunger, who laughs when tickled and who snuggles into Carl’s shoulder for comfort as he holds her. The young couple – who have four other children – want her to live, and die, at home with them.

“At first we just didn’t want to accept what had happened to her,” says Suzanne.

Learn More about Schizencephaly from the National Institutes of Health


Tags: Rare Diseases and Disorders News of the Week Pretzel Syndrome Newsletter 29 October 2010 Schizencephaly