All original content copyright Emma4facs 2012 – 2014 x
Im Emma age 32 from Manchester. My profession is a Nursery Nurse and I’m mum to Chloe (10) Lauren(9) Luke(8) Erin(6) and Kian (4)
I was diagnosed with Epilepsy aged 12 having suffer regular seizures both Grand Mal/ Tonic Clonic and abscent seizures. I was medicated with the medication Epilim (Sodium Valproate)
The advice given to me by my Neurologist, was always to take my medication as this would help control my seizures, so trusting the experts always done so. When I first got pregnant with my daughter, my husband and I decided to have my ante-natel care at my local hospital as that was also where my Neurologist was based. Throughout all my pregnancies my medical team were aware I was on Epilim, and the advice my husband and I was given, was to carry on taking my medication and to increase my dosage of Folic Acid.
The children were all born, over a period of 5 years however with them all they always seemed to be ill, were never reaching milestones, had delayed speech etc.
I was convinced something wasn’t right. It didn’t seem right that all my babies were showing signs of illness, delayed milestones etc. When I was pregnant with my 1st daughter my mum passed away very suddenly aged 42. I was devastated by this and was very quickly diagnosed with depression. Having lost my mum the GPs, Health Visitors etc thought I was being paranoid, over protective mum when I would voice my concerns over the kids. I was always being reassured the children were fine and they would catch up.
One day I saw on the news a lady talking about the dangers of Epilim in Pregnancy, how whilst pregnant it could affect the baby, which could result in the baby having a condition called FACS (Fetal Anti Convulsant Syndrome) I was speechless watching this. I knew there and then, the children had this condition. It was as if a light had been switched on, everything the lady was saying was exactly what I had been saying for years. I rang the news immediately and was put in touch with Janet Williams. To cut a very long story short after months of tests, Drs appointments my children were diagnosed with FACS SYNDROME – the medicine I was prescribed HAD affected my babies. As well as the diagnosis of FACS, my children also went onto obtain diagnosis of ;
• Facial Dysmorphic Features
• Cerebral Palsy
• Valgus Foot
• Speech & Language Delay
• Autisic behaviour/Dyspraxia
• Noise Intolerance
• Deafness and more
In November 2013, along with Janet Williams I Co-Founded FACSA – a parent/family support group for families affected by Epilim and other Anti Convulsant medicines. At the same time we also started campaigning in Government and have since been named as Government Campaign Group for Epilim (IN-FACT)