A Mum's Story

I do not use my real name because this story is about my daughter, and I want to protect her privacy. She was born with a rare condition that affects her breathing, and from her very first day, our family became a medical team.

Our home has more equipment than some hospital wards. The alarm on her monitor goes off throughout the night, and I have trained myself to wake at the slightest sound. My husband and I work in shifts — one of us sleeps while the other watches.

For years, I did not think of myself as a carer. I was just a mum. It was a health visitor who first suggested I contact Carers in Luton. Through their family support service, I connected with other parents in similar situations. Knowing that someone else understands the 3am fear — that has been invaluable.