We celebrated my girl’s 18th at her funeral

My daughter Libby stopped in the street and looked up hopefully. ‘Carry me, Mummy?’ she smiled. It was 2016 and at five, she never seemed to want to walk anywhere. Laughing, I hoisted her up on to my hip.

I assumed Libby was just being lazy, but a few days later she spent a whole day hopping on one leg. ‘My knee’s hurting,’ she said.

Her dad took her to A&E to check it was nothing serious. But when he rang from Pontefract Hospital, he sounded worried.

‘They’re keeping her in,’ he gasped, explaining the doctors seemed concerned and wanted to run some tests.

She was transferred to Pinderfields Hospital in Wakefield and we took it in turns staying overnight with Libby.

A week later, a specialist revealed our little girl had juvenile idiopathic arthritis. It caused swollen, painful joints and damaged the cartilage between the bones.

‘I thought arthritis only happened to old people,’ I blurted.

‘Most children grow out of it by their teens,’ the doctor said.

I clung to that thought as the news sank in. We just needed to get her through the next eight years, then she’d be OK.

So we took Libby home with painkillers - and a wheelchair. But soon she was spending more time at hospital than school, due to the pain she was in.

Years went by, and Libby’s hospital stays became part of life. By 12, one ankle was so eaten away she had surgery to fuse the joint with two huge bolts.

Libby’s condition didn’t seem to be getting any better, just worse. So a year later, in 2017, doctors suggested a bone marrow transplant, where the donor stem cells could reset Libby’s immune system.

It would stop attacking the cartilage and worsening the arthritis. It couldn’t repair the damage, but might prevent any more.

Except, Libby’s chance of survival was only 50/50. Her rare condition, combined with such a radical treatment, meant it had a high death rate.

We couldn’t risk losing her so we decided against it, hoping that Libby’s condition would improve on its own.

At 14, Libby had her first proper boyfriend. He was lovely and it was nice seeing her so happy. But one day, when she was feeling a bit better, he let her ride on his bike handlebars. ‘What were you thinking?’ I spluttered, angry because she could have fallen and seriously hurt herself.

‘Oh Mum, I just want some fun!’ Libby sighed. I felt terrible for her – she just wanted to be a normal teenager