Healthcare vital for severely disabled children

NICOLA KILBRIDE was an ordinary healthy infant until she suffered an epileptic attack at the age of three.

For no apparent reason, the Dublin girl gradually lost her speech, power and co-ordination in front of her baffled and heartbroken family over the next 18 months.

It took a further two years of various medical tests before Nicola was finally diagnosed as suffering from a little-known brain disorder called Landeau Kleffner Syndrome.

So rare is LKS that there are only about 150 documented cases worldwide about the illness that affects the left side of the brain the part which controls speech, memory and language.

"Some people have described the condition as being akin to the wiring in your brain having gone wrong," said Nicola's father, Derek.

Although, the exact cause of LKS remains to be established, one Harley Street specialist believes it could be linked to the MRI vaccine. Regardless of the origins of LKS, the Kilbrides are aware there is no known cure and that Nicola, now 18, will not enjoy any noticeable improvement in her quality of life with time or therapy.

Although, Nicola has some mobility, she is still confined for a large portion of each day to a wheelchair. LKS also causes disturbances to normal sleep patterns which results in many sleepless nights for the whole family.

"The condition is so severe that Nicola hardly knows what a television is," said Derek, who moved the family home from Dundrum to Blanchardstown to enable Nicola to attend St Vincent's Developmental Education Centre on the Navan Road.

The recognition that severely disabled children like Nicola need 24-hour healthcare prompted her father to become involved in the campaign to restore healthcare as the primary focus of the centre.

Although Nicola is moving this autumn to the adult centre at St Vincent's, he is angry at the switch in emphasis to educational services for other children like Nicola.

"What benefit are classes to someone like Nicola, who has a mental age of a one-year-old," said Derek. "The primary focus must be on healthcare. This is not an issue about funding but the allocation of resources. The best of health treatment should be made available for severely disabled children as it breaks your heart to see the effect of not having it can have on families."