Help please keep Bailey-Rae-safe during her seizures

Hi, I’m Bailey-Rae’s mum, and it’s taken a lot for me to share our story — but I’m doing this because my daughter desperately needs support.

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.

She is under the care of two specialists and regularly has EEGs and MRI scans, as her seizures affect her entire brain and body. She’s on daily medication, but it comes with serious side effects — constant tiredness, sickness, memory loss, and brain fog.

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.

On top of this, Bailey has already suffered huge emotional trauma. She lost her baby sister in 2020 as she was born too early and sleeping…she then lost her beloved grandad, “Gangy,” in 2021. He helped raise her, and she still grieves for him every day. She does now have another little sister who is 2 and would love to be able to enjoy things with her more, as she lives in fear of experiencing another tragic loss.

Bailey has missed over 9 months of school due to her seizures. She’s 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 — especially seizure monitors, a specialist mattress, and safety supports, a fall detection watch, fall detection monitors, that can help reduce her SUDEP risk.

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, wellbeing, and a better quality of life. The equipment required is not available on the NHS except a pillow which she has and aids we have bought so far. She deserves to live like any other 13-year-old — to laugh, to go to school, to enjoy being a teen — without the constant fear of another seizure.

Thank you for reading, and thank you from the bottom of our hearts for any help you can give.

With love,

Bailey-Rae’s Mum