We first became concerned about our identical twin daughters, Mari and Lowri, when they started being mobile at around 18 months old. While toddling around like any ‘normal’ child they would frequently fall over and bang themselves – but in their case, this would usually result in a short period of unconsciousness.

When I reported this to the GP, I was told that it was probably breath-holding attacks for attention-seeking. But as the girls were already being monitored for a previous medical condition by the paediatric department at the local hospital, we just asked for our follow- up appointment to be brought forward. The usual tests for epilepsy – EEG etc – were carried out, but luckily were seen by a sympathetic doctor who said it was something to do with the heart and that these episodes would pass when the girls were more secure on their feet.

They did, although occasionally over the years whenever the girls experienced unexpected pain they would ‘faint’ but not often enough to cause concern. Then when they were 9 years old we had to go to the dentist. Lowri had to have a treatment and as soon as she came out of the treatment room she had a classic reflex anoxic seizure, including stiffening of the limbs. Within seconds, Mari had an identical seizure. Both took a while to recover: thankfully, we only lived around the corner so I could get the girls home to ‘sleep it off’.

At the time I worked for an epilepsy organisation as a co-coordinator/information/field officer. So I was well aware of all the different types of seizures, and also of the medical system. When I approached the GP about a referral they insisted that we should be referred back for a neurological check-up. After I insisted on a referral to a paediatric neurologist, we got an appointment and the specialist just confirmed what I suspected. However, as the seizures were not that frequent, he felt that a cardio check-up was not needed. He said they would grow out of it, but that if they did not or if they got worse, we should go back to the GP and seek a cardiology referral.

Two years passed and the girls hit puberty. At this point the seizure frequency increased. So back to the GP we went, only to be met with the same response: it couldn’t possibly be a cardiac problem and we should be referred back to a neurologist. But I fought my corner and after seeing three different GPs we got our referral.

Since then the girls have become extremely anxious about having a seizure. This has caused more problems than the seizures themselves. They had a full-blown seizure last September when they lost bladder control and since then they have become petrified of having a seizure in school or in front of their friends.

It has also been ‘spooky’ seeing identical twins seem to feel each other’s seizures even though they are not in the same room. For example, one day Mari had to attend the opticians. She was in the examining room and Lowri and I were in the waiting room. Lowri was reading a magazine when suddenly she groaned, her colour drained and she said she had a pain in her head (all symptoms prior to a seizure). Within seconds we heard Mari cry out and the optician came out of the room to tell us Mari had passed out when she had shone the bright light into her eye.

The paediatric cardiologist has explained to us that there isn’t anything medically he can do for the girls, as now their problem is one of extreme anxiety. He has referred them to a psychologist to help them deal with their fears and concerns, and we are currently waiting for this to begin.

As a parent, I feel that the problem I had in getting a diagnosis was with the frontline services at GP level. One GP actually said they had never heard of the condition.

But once past the GP, we cannot praise too highly the service we have received from the specialists along the way.  The girls’ school has also been very understanding and supportive. Whenever I have needed to approach them about a specific problem they have listened and put the necessary procedures in place.

View ITV Wales coverage of Mari and Lowri and listen to Bridge FM Radio interview with Mari and Lowri during Arrhythmia Awareness Week

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