Mother’s campaign for families

Janet with her sons Lee (left) and Philip.
Janet with her sons Lee (left) and Philip.

A Wyre mum has set up a trust to help parents who believe their children were left disabled after they took anti-epilepsy medication when they were pregnant.

Janet Williams, of School Lane, Pilling, had already started up a charity and support group for mums and dads of children with foetal anti-convulsant syndrome and was part of a group of parents fighting through the courts to sue a drug manufacturer for damages.

But the case was dropped earlier this year after legal aid was withdrawn.

The 47-year-old has been involved in starting a new trust, called FACT (Foetal Anti-Convulsant Trust) and hopes to work with the Government and drug companies to look into the problem.

Janet was pregnant with sons Lee and Philip – now 21 and 20 – when she was taking the drug Epilim to control her epilepsy, which she has suffered from since her teenage years.

She said: “At OACS (Organisation for Anti-Convulsant Syndrome), we have around 600 children on our books.

“There are a small proportion with spina bifida and kidney malfunction, but the vast majority have cognitive development difficulties, some are on the autistic spectrum.

“Both my sons have cognitive development and speech and language difficulties and difficulties with vision.

“A lot of children are affected far more seriously.

“As a mum you do feel somewhat guilty and take some element of the blame.

“You know it’s not your fault, but you also know it was because of medication you were taking, so you can’t help but feel in some way to blame.

“A lot of these parents will be looking after their children for the rest of their lives – some of the children are in their 30s now. But what happens when their parents are gone?

“It’s very similar to the thalidomide incident really.

“It was only in 2006, they started putting big warnings on the patient information leaflets – Epilim has been going since 1978.

“We just want both the Government and the drug companies to face up to their responsibilities.

“We want to make sure women are fully informed – before they get pregnant.

“We want to make sure they are armed with enough information to be able to make that choice, we’re not saying people should stop taking their medication.

For more information, log on to www.oacs-uk.co.uk.