Bailey's epilepsy inspires challenge.
A CARDIFF dad, whose son has a rare form of drug resistant epilepsy, is raising funds for equipment to ensure other children don't have to endure gruelling attempts at treatment which won't work. Bailey Williams, 12, tried 15 drugs, with side effects including tremors and hair loss, before doctors diagnosed Lennox Gastaut Syndrome, a rare form of drug resistant epilepsy.
Now dad Craig, 43,wants to spare other young people what he went through and is nearing his PS65,000 target to fund a new Video Telemetry Suite at the University Hospital of Wales. On Sunday Craig, who has already raised PS40,000, will be joined by 100 cyclists riding from Brecon to Cardiff to raise thousands more towards the target.
The equipment can diagnose what type of epilepsy patients have without trying multiple different drugs.
"Even though Bailey was diagnosed with epilepsy, we still had to identify the correct syndrome which can only be done via the trial and error of different drugs," said Craig, a sales manager at A&A Tyres Services.
"Bailey tried over 15 which gave him side effects of hair loss, tremors, confusion, poor co-ordination, skin rashes, hallucinations and drooling. "He was admitted to hospital on numerous occasions including intensive care due to a prolonged seizure.
"If Cardiff had a telemetry suite, Bailey could have been diagnosed within one week and prevented all those horrific side effects he suffered. Instead, he endured two-and-ahalf-years of numerous Electroencephalography tests combined with drugs before diagnosis.
Healthy until he was three Bailey woke one night choking. Craig and mum Rachel dialled 999 and he was rushed to hospital where doctors hoped it was a one-off seizure. But the fits continued and got worse.
Over the next few years the youngster tried different medication before Lennox Gastaut Syndrome, which affects between 1% and 5% of epilepsy cases, was diagnosed when he was six.
Now Bailey, a pupil at Ysgol Erw'r Delyn in Penarth, has hundreds of seizures every day and night.
At times his condition has been so severe he's had to wear a hard hat to protect him from falls, he once narrowly escaped injury falling through a glass television cabinet and sometimes uses a wheelchair.
"Through all this he's never complained. I call him Super Bailey," said his proud dad.
"Once, when he was about nine and having a seizure he asked, 'Dad, when am I going to be normal?' but that's all.
"His downturn was pretty quick.
"He had reached all his milestones and was learning Welsh when he had his first seizure. Now we don't know what the future holds."
The couple's younger son, Ross, seven, also has mild epilepsy but his is controlled with medication.
"The couple have made their home in Fairwater as risk free as possible and Rachel gave up her bank job to care for Bailey.
Craig is naming the bike ride A&A Tyres Charity Bike Ride to thank his firm for standing by him.