Council denies funds for Ellie's treatment

Published on Friday 17 April 2009 09:48

A TWO-year-old girl with a condition so rare that doctors have only given it a number have hit out at the city council for denying her funding to attend the only specialist centre that can treat her.

Carrie Innes has been fighting for money to send daughter Ellie to the Scottish Centre for Children with Motor Impairments in Cumbernauld, but the council has said it cannot fund Edinburgh children's care in other areas.

As well as suffering from a condition called microcephaly hemiplegia – which causes paralysis on one side of her body – she has a rare genetic condition.

Medics have identified a chromosome problem in her genes but cannot put their finger on what is wrong, nor have they seen it before.

She was able to attend the Craighalbert for free until she turned two, at which point the facility charges 1500 per year.

Ms Innes, a cash and carry worker, said: "Since she went there, even though it was only in December, we noticed such a huge difference."

Aware that the funding requirement was to come into place Ms Innes – who lives at home with Ellie's dad Andy, 31, and brothers Ryan, 11, and seven-year-old Mitchell – contacted the council, saying ideally her child could attend four days per week.

But the local authority said it could not pay for such facilities outwith the city, and instead offered her half-a-day a week at an Edinburgh special school.

It is understood the council has no statutory obligation to provide education facilities for children under the age of three, although it has indicated in a statement it is willing to discuss the case further with the family.

"There's nowhere else we can get the conductive education – which is learning through play – that has benefited her so much," Ms Innes added.

Ellie was diagnosed with the hemiplegia when she was nine months, and when further scans were being carried out the chromosome problem emerged.

"We see her as special rather than there being something wrong," Ms Innes added. "They don't even have a name for it, all the documentation is just a huge list of numbers."

A council spokesman said: "The council works very closely with NHS Lothian to provide relevant services to children in Edinburgh who have additional support needs and we have a wide range of accessible and specialist provision in our schools for children of all ages.

"We are happy to discuss any child's particular requirements."