A seizure disorder can stop a toddler's heart

A couple have spoken about a medical condition which can stop their toddler daughter's heart every time she cries.

Tianne Lewis, two, from Wrexham, suffers from reflex anoxic seizures (RAS), which start when she is shocked by something, or bursts into tears.

Andy McHugh and his fiancée Ceri Lewis feared they might lose their daughter after one terrifying episode.

Mr McHugh said: "Anything that causes her to cry - falling down to bath water being too hot - can stop her heart."

The condition was discovered when Tianna was about 18 months old.

Although the family have been told there are no known fatalities, Mr McHugh said doctors were once concerned Tianna might not survive.

As soon as she starts to cry we head for the shower or the tap, and it goes straight to her face... I know it sounds awful, but we have to act quickly and it shocks her into taking a breath Andy McHugh, Tianna's father

He said: "She had a seizure and this led to her fitting, and it went on for about two hours.

"The doctors told us that if she didn't come around within 10 or 15 minutes, she might not make it."

Mr McHugh, a car salesman, added: "When she cries, she suffers seizures.

"Whereas a normal baby will cry and take a breath, she cries and her heart stops.

"We basically have to shock her out of it before it happens.

"As soon as she starts to cry we head for the shower or the tap, and it goes straight to her face.

"I know it sounds awful, but we have to act quickly and it shocks her into taking a breath."

Mother Ceri, a hotel receptionist, remembers the moment her daughter first had a seizure.

'Deathly grey'

She said: "I picked her up out of her high chair and put her on the floor and she cried for seconds and then she looked like she had died.

"She went a deathly grey, her lips and around her eyes were blue and her eyes rolled back in her head.

"When she has the fits she stops breathing and looks dead because she stiffens up and her back arches.

"I thought she was dead and I was hysterical."

On that occasion, Mr McHugh rushed home from work and gave his daughter mouth-to-mouth resuscitation - after which she took a "massive breath".

The couple are slowly getting used to their daughter's condition, which they hope she will grow out of.

The pair have been supported by the Syncope Trust And Reflex Anoxic Seizures charity (Stars).

Mr McHugh now hopes to raise awareness of the condition and to raise money for the charity with friends by cycling around Wales next year.

Stars founder and chief executive Trudie Lobban said the condition could be as common as epilepsy, but it is thought it is being misdiagnosed.

She added: "Stars is working to support to increase awareness of RAS and to ensure children are correctly diagnosed.

"Unfortunately, statistics have shown that up to 39% of children diagnosed with epilepsy are actually misdiagnosed and many of them will be suffering with RAS."