Still bringing light into children’s lives

Sep 2 2008 by Emma Pinch, Liverpool Daily Post

Still bringing light into children’s lives

As we look forward to celebrating Roald Dahl Day on September 13, Emma Pinch looks at the author’s gift to children and parents in Liverpool

THE twits, The BFG, and the Witches were just some Roald Dahl’s unique gifts to the world. But his efforts to make the world a warmer, brighter place didn’t end with his death.

A lesser known legacy of Dahl was the funding of a battalion of nurses equipped to lend specialist knowledge and support to children and parents affected by neurological conditions.

And the pioneer of the Roald Dahl nurses scheme was Anne Sweeney, an epilepsy nurse specialist at Alder Hey. She’s patrolled the neurology ward, visited homes and schools and simply offered a friendly ear for thousands of parents with children with the condition for the past 15 years.

One of those people was mother-of-three Margaret Patterson, from Broadgreen, whose eight-year-old son, Joshua, suffers from a complicated form of cerebral palsy.

“A few weeks ago, I was standing in the middle of a field in Shropshire and rang Anne on my mobile,” says Margaret. “Joshua was fitting more frequently and she was able to reassure me it was because of the change in medication.

“Considering how vulnerable you feel when that is happening to your child, having that reassuring voice at the end of a phone whether it’s 9am or 5pm at night is invaluable.”

Like most people, Margaret had known little about epilepsy before Joshua was born.

“I associated it with jerkiness, rolling on the floor and foaming at the mouth,” she says.

“Unless you are completely familiar with Joshua, you wouldn’t know he was having an epileptic fit. The signs are very subtle. He turns his head to the side and his eyes sort of shake. It leaves him very very tired and very drained. Afterwards he’ll go to sleep for an hour. The symptoms don’t necessarily tell you what is going on under the surface. There is a thunderstorm going on in his brain. But because Joshua doesn’t have any verbal communication you have to monitor him very closely and look out for erratic sleep patterns and anything that could affect him.”

Little was known about the needs of children and parents with epilepsy until Anne Sweeney completed a study into febrile convulsions 15 years ago.