Craig and Alba

Being a father to a daughter who has epilepsy

Craig’s daughter Alba was diagnosed with epilepsy when she was three years old.

Craig shares how he felt when his daughter was diagnosed with epilepsy and the challenges of being a father of a daughter who is living with epilepsy.


How old was your daughter when she was diagnosed with epilepsy?

Alba was two when she first started seizing but didn’t get diagnosed until she was three.


Can you tell us a bit of background on how your daughter was diagnosed with epilepsy?

Alba started having mild seizures when she was in the part of her sleep cycle when she was waking up.

Seizures then started happening in the early hours of the morning. These continued, and eventually she got diagnosed with focal epilepsy.


How did you feel when your daughter was diagnosed with epilepsy?

A mixture of relief and worry! It was good that she got a diagnosis and could start trialling medication to help control it, but at the same time there was the worry of how this was going to have an impact on her life, as well as ours.


What type of seizures does your daughter have and how does it affect her?

Alba has focal seizures, she only has them during her sleep, and she has had some quite bad seizures in her time.

She rolls her eyes back into her head and gulps loudly with her mouth open, and it wakes us up instantly now that we are tuned into them.


What challenges have you faced being a father of a daughter who is living with epilepsy?

To be honest, we are very lucky in comparison to lots of people living with epilepsy.

Alba’s medication keeps her seizures under control, and she has only had a seizure once in the last six months. However, epilepsy has had an impact on certain aspects of life.

Trying to explain that Alba needs to get a full night’s sleep, so missing out on social/family events.

Alba also shares a bedroom with me and my wife, in the fear that we will miss a seizure, so she doesn’t have much independence.

Going forward, sleepovers with her friends will be off the cards unless they are at our house, school trips away won’t happen as it will be too much of a risk.

These are small prices to pay to keep her safe while she is young.


What impact has epilepsy had on your daughter?

Alba takes epilepsy in her stride. She is the most confident, sassy, brave and funny young girl.

She likes to talk to people about epilepsy and educates them about it.

This doesn’t come without the occasional breakdown. Asking why she has epilepsy and that she doesn’t want to have it anymore.


What support have you received since your daughter was diagnosed with epilepsy?

We have had great support from Epilepsy Scotland, completing our disability benefit forms, to ensure Alba can receive the care that she needs, which is mainly being given her medication and being monitored continually during the night.

Alba also received letters from Epilepsy Scotland with activities and a hand-written letter, which makes her feel special.


What would you say to a parent who’s child has been recently diagnosed with epilepsy too?

Don’t panic! It is all very daunting, and lots of people are there to help.

There are social media groups for people with epilepsy or who have children/family with epilepsy.

Lots of people think epilepsy is someone that have seizures to flashing lights, so be prepared to educate those that think your child can’t go to a school disco when they might be absolutely fine with flashing lights.

Initially, we were told to wait five minutes, however after a couple of bad seizures we started dialling 999 immediately.

A couple of her most recent seizures, we have called the ambulance off before it has arrived as her seizures have stopped and she returned to normal. It’s easier to cancel an ambulance than to hurry it up!

We use a ‘non-medical’ device called an ‘owlet’ which keeps Alba’s vitals measured.

If her heart rate or temperature go too high or low or the oxygen levels in her blood get too low then an alarm goes off.

This alerted her to the last seizure she had (which is the only seizure she has had when wearing it).

Even though it is not recommended as a medical device, I do not doubt it will help many other parents get a good night’s sleep, it has worked wonders for us.


Is there anything you would like to add?

Alba is such a special daughter, and epilepsy is just part of who she is, but epilepsy should not be any child’s identity.

We just want Alba to be able to live her life as she wants to, and I am certain that she will continue to be brave and go on to achieve whatever she puts her mind to.