I'm so scared my 13-year-old daughter could die in her sleep

Bailey-Rae has been diagnosed with multiple types of epilepsy, including life-threatening tonic-clonic seizures, which often occur during sleep and put her at high risk of SUDEP (Sudden Unexpected Death in Epilepsy).

Despite daily medication and constant monitoring, her seizures continue, and she’s also been diagnosed with autism and a painful lifelong condition affecting her muscles and tendons, further impacting her mobility and quality of life.

Her frightened mum Nicola Cooper has set up a GoFundMe in the hope of raising funds to provide her daughter with essential safety equipment such as seizure monitors, fall detection devices, and specialist bedding, to help reduce her risks, regain some peace of mind, and give her the chance to live like any other teenager.

Nicola said: “Bailey-Rae is just 13 years old, and over the past year, her life has changed completely.

“She began suddenly suffering from violent seizures, sometimes stopping breathing and remaining unconscious for over 20 minutes. Each time, we’ve had to call 999.

“What we hoped was a one-off turned into regular, life-threatening seizures.

“After months of tests, Bailey has now been diagnosed with various types of epilepsy. The most dangerous being Tonic clonic seizures which massively increases the risk of SUDEP.”

Bailey-Rae is under the care of two specialists and regularly has EEGs and MRI scans, as her seizures affect her entire brain and body.

She is also on daily medication, but it comes with serious side effects such as constant tiredness, sickness, memory loss, and brain fog.

Nicola added: “Even more frightening is that her seizures often happen when she’s falling asleep or waking up, putting her at high risk of SUDEP (Sudden Unexpected Death in Epilepsy).

“She’s already fallen out of bed during seizures, once becoming trapped and almost suffocating.

“That time, I heard her just in time and called an ambulance. But I live in fear — we both do.

“We’ve been advised not to rely solely on alarms, but despite using baby monitors, seizure pillows, and cameras, we’ve still missed three seizures.

“I can’t describe how heartbreaking and terrifying it is to see her injured and in pain, knowing I wasn’t able to get there fast enough.

“Bailey has recently been diagnosed with autism, and we’ve now learned that the pain she’s always felt in her legs and feet is due to a lifelong condition: her muscles, bones, and tendons are too short.

“Even with physio, she’ll live with daily pain and mobility issues.”

Get a bespoke headline round-up, as well as breaking updates, when you sign up to the The Lancashire Post’s free emails

Bailey has also suffered emotional trauma having lost her baby sister in 2020 as she was born too early and sleeping.

She then lost her beloved grandad “Gangy,” in 2021.

Nicola said: “My daughter is scared to sleep, scared of what her body might do, and I rarely sleep at all because I’m constantly watching over her.

“Despite all this, she’s brave, kind, and just wants to feel safe again.

We are raising funds to get Bailey the essential equipment she needs to stay safe at night.

“We’ve done everything we can within our means, but we’re at a point where we need help.

“The NHS has been brilliant, but response times and access to emergency care are difficult.

“We’d love to explore private care to help speed up her support — even if just to help her sleep peacefully again.

Every penny donated will go directly toward Bailey’s safety, well-being, and a better quality of life as she deserves to live like any other 13-year-old.”

If you would like to make a donation to the GoFundMe click HERE.