Boy diagnosed with life-threatening illness on Facebook after worried mother posted footage of seizures onlineDoctors put little Evan Owens' seizures down to him holding his breath during tantrumsConcerned mother Cerys posted film of her son's attacks on Facebook in last-ditch bid for answers
Friend quickly diagnosed rare Reflex Anoxic SeizuresCerys has praised social networking site for helping diagnose serious condition
17:13 GMT, 20 May 2012
A baby boy was diagnosed with a life-threatening illness using Facebook – after a friend spotted his rare condition which doctors had missed.
Little Evan Owens suffered from seizures but medics thought he was just holding his breath during tantrums.
In a desperate bid to get to the bottom of the worrying attacks, mother Cerys, 33, filmed one of the seizures and posted it onto her Facebook page.
Missing clues: Evan Owens, now four, was suffering life-threatening seizures which doctors mistakenly thought were actually him holding his breath during tantrums
She asked anyone on the social networking site: ‘Does anyone know what this is’
And one of her friends quickly messaged back saying it looked like a rare condition called Reflex Anoxic Seizures.
It can be triggered by pain, a fright and causes the heart to slow down or even stop altogether.
Cerys and her husband Rob, 35, of Ystradgynlais, Swansea, South Wales, took baby Evan back to the doctor and suggested the Facebook diagnosis.
The tot was admitted to the University Hospital of Wales in Cardiff where it was confirmed he was suffering from had Reflex Anoxic Seizures.
Desperation: Concerned mother Cerys Owens posted a video of her son Evans' fits in a last-ditch attempt to find out what was wrong
Civil servant Cerys said: ‘It was terrifying when we didn't know what it was – he was having up to 17 seizures a day.
‘If I had not gone on Facebook we would still not have had a clue what was causing them.
‘There needs to be more awareness. It's a very unknown condition.’
‘Facebook comes in for a lot of stick and criticism but if it helps one more parent like this it's worth it.’
Doctors say Evan, now four, should grow out of the condition as he grows up.
Teachers at his nursery school know what to do if he has an attack which can last 45 seconds and send him unconscious.
Force for good: Now armed with the correct diagnosis thanks to the Facebook post, Cerys, pictured with other son Alun, 2, and her husband Rob, 35, has praised the power of the online community
Mother-of-two Cerys said: ‘He will say afterwards that it goes black, and there is a buzzing sound in his ears.
‘He can either be very tired and clingy, or also very angry as he comes to understand what has happened to him. It's heartbreaking.’
Experts say the condition, like other heart rhythm disorders, can be hard to diagnose.
Jenni Cozon, head of patient services at the Stars, a charity which helps people with the disorder, said: ‘Sadly, Cerys is not alone in her struggle to find the correct diagnosis for her baby.
‘Many children with RAS are misdiagnosed with breath holding.’