Mum 'sleeps with one ear open' to save daughter's life every time she stops breathing

A mum has said she has to "sleep with one ear open" to make sure her daughter doesn't stop breathing at night.

Kay Foulds' youngest child Agnes Rose has autism, brain disorders, epilepsy and diabetes, and will often fall silent when she's in bed.

It means Kay has to step in to help by bringing her back to life on a regular basis.

The mum from Dyserth, who has three children - two of whom are autistic - admitted it can be tough but a privilege looking after Agnes, who also suffers with hypertonia, making her arms and legs stiff and difficult to move.

The pair were mainly restricted to their house before local charity Belief stepped in and gave them a lifeline - a tricycle that Agnes can ride as her conditions leave her unable to use a conventional bike.

Kay admitted she'd shut herself off from the world when her children were little, dealing with the weight of everything on her own.

But it's only recently that she's felt confident enough to seek help and invaluable support from parents in similar situations by attending a pop-in centre in Prestatyn.

Kay said: "I have two children with autism, my son, 31 who lives in supported housing in Henllan and visits every week, and Agnes, who lives with me. My eldest daughter lives in Chester.

"As a single parent, it's been difficult. The last thing I wanted to do was talk about disabilities and struggles, but I know now, since going to the pop-in centre- that it was the best thing I could have done knowing I'm not alone."

She added: "Agnes has full epilepsy.

"Anything can cause a seizure, usually upset, but tiredness, heat, diabetes or a high temperature can trigger them too.

"When she has a grand mal seizure, her diaphragm gets tightened and she stops breathing so I have to sleep with one ear open.

"She turns black and I administer buccal diazepam, which starts her breathing again.

"I don’t think I’ll ever get used to it no matter how many times I’ve dealt with it.

"Because of this it means she can't go into respite care."

Kay said: "This is why exercise to keep her blood sugar better is so important.

"Agnes has many challenges including no awareness of danger, which is why I care for her 24/7.

"She is a wonderful person and caring for her is difficult but also an honour."

Kay said things got increasingly hard during lockdown as it meant they couldn't get out much to exercise.

But the donation of Agnes' new tricycle has "changed life completely" allowing her to do something she's never been able to do before.

"It's been amazing," said Kay.

"Agnes has never been able to ride a conventional bike because she's hypertonic. But this new bike is perfect because it folds up, meaning we can put it in the car and take it to places with flat surfaces as where we live is quite hilly.

"Her muscles have been aching because she's been on it so much, there's no stopping her. I can't thank Belief enough, it's made such a positive difference to both of our lives."