My Story

In 2001 our first child Bailey Williams was born healthy and weighed 7lbs 10ozs, he continued to reach all his milestones including counting and speaking in welsh, then in 2004 our nightmare began. We were woken up early hours of the morning to a choking sound coming from Bailey , his eyes were rolling in the back of his head and he was violently shaking from head to toe, as you can imagine we panicked and dialled 999. He was rushed in to hospital and discharged the following morning being told it was a one off seizure called a febrile convulsion.  4 weeks later we were woken up again to the same noise and again he was rushed into hospital, this time they investigated  and came to the conclusion he had Epilepsy.  He was given medication to take twice daily which controlled the seizures until 18 months later whilst on holiday in West Wales.

Bailey had 2 large seizures (Tonic Clonic) but this time the seizure affected his breathing and he was  starting to turn blue due to lack of oxygen. The worry of the nearest hospital being over 30 minutes away was unbearable, again he was rushed into the hospital where they contacted his Dr back in Cardiff who advised them to increase the medication. We were also given Buccal Middazolam which is used as an emergency drug to control prolonged seizures. From that day on Bailey started his down turn in health, he went from a couple of seizures every few months to 1 a day and up to present day he has hundreds every day.  

Even though Bailey was diagnosed with Epilepsy he still had to be diagnosed with the correct syndrome which can only be done via trial and error of different drugs. Bailey tried over 15 in total which gave him side effects of hair loss, tremors, confusion, poor coordination, skin rashes, hallucinations and drooling. Bailey was admitted into hospital on numerous occasions including intensive care due to a prolonged seizure. After 2 and a half years of having numerous EEG combined with the trial of drugs they gave him the diagnosis of LENNOX GASTAUT, a severe form of Epilepsy which is drug resistant, not the news any parent wants to hear. If Cardiff had a telemetry suite Bailey could have been diagnosed within one week and prevented all those horrific side affects he suffered.

Then in 2006 our second son Ross was born again healthy and weighing 7lbs 10ozs, then in 2012 he was diagnosed with a mild version of Epilepsy. At this point myself and Rachel's world fell apart thinking why has this happened to our second son, after watching Bailey what he went through we were determined to make sure Ross didn't suffer like his big brother. This then prompted us to ask  the hospital why Wales haven't got the facility. We then decided to fund raise for the Video Telemetry Suite and prevent all kids suffering from Epilepsy by raising money needed to get Wales their own Telemetry Suite.

Thanks for taking the time to read my story.

Craig Williams & Family