• Julia Sidwell

I always knew I'd bury my daughter...

Lyn always knew she would bury her daughter, ever since Amy was diagnosed with Cystic Fibrosis. We shared her story in The Sun to raise awareness of the condition. Do you have a story to share, as tribute to a loved one? #sellmystory #raisingawareness #TheSun

sell my story cystic fibrosis

You can read her story here:

  • Lyn, 45, was thrilled to become a mother, but at six weeks old her daughter Amy was diagnosed with Cystic Fibrosis.

  • From that moment on, Lyn knew she would outlive her little girl and every morning wondered if this was the day Amy would die.

  • Amazingly, Amy defied the doctors and despite many hospital admissions, she was a happy-go-lucky girl with eccentric fashion sense.

  • Then, when Lyn was least expecting it, Amy died aged 21.

  • She had no idea that her daughter already had her whole funeral planned out.

  • On the day, Amy was carried in a leopard-print coffin, with everyone donning an item of leopard-print clothing at her request.

When Lyn became a mother for the first time, her days of broken sleep and nappy-changing were quickly turned upside down. Her daughter Amy wasn’t gaining weight and after a visit to the hospital, Amy was diagnosed with Cystic Fibrosis at six weeks old. Lyn had never even heard of the disease. But then the doctor said something that shook her to the core: ‘Take her home and enjoy her.’

In that moment, hearing those words, Lyn knew she would outlive her child and have to bury her.

Lyn’s every waking minute was dedicated to Amy whose life consisted of hospital appointments, a cocktail of medicines, inhalers, injections, nebulisers and physio. It hurt Lyn to see her daughter become the child who always had coughs and colds, and become the one who wasn’t invited to parties because parents were ignorant and children didn’t know any better.

Lyn went on to have Sam, now 20, and Jessica, now 18, and her children formed a fantastic bond. Lyn tried to make their lives as normal as possible by taking them on days out and away for the occasional holiday.

When Amy was 10, she said: ‘I’m going to die young aren’t I Mum.’ She was now old enough to understand just how seriously ill she was. Yet even being in constant pain and finding breathing difficult, Amy was a happy-go-lucky girl who liked dying her hair an array of different colours and loved wearing wacky outfits including anything leopard-print.

Then, just when Amy seemed to be doing better than ever – she had put on weight and her lung function was up - an X-ray showed a cavity in her lung and she was struck down with an infection.

'It’s different this time Mum,’ she said.

‘You’ll be fine Looby Loo,’ Lyn said.

But Amy was already planning her own funeral. She decided on a leopard-print coffin, wanted everyone to wear an item of matching leopard-print clothing and chose the song ‘I’m On My Way’, by Phil Collins.

Sure enough, Amy was right and her health quickly deteriorated. Lyn gripped her hand tightly and said: ‘Promise me you’ll come back and see me.’ (Photo attached of them holding hands).

The next day, Amy slipped away aged 21.

Her funeral was exactly how she’d wanted. She was dressed in a Legend of Zelda Elf costume, carried in a leopard-print coffin and afterwards everyone said goodbye by releasing leopard-print balloons.

Now, a year on, Lyn is ready to share her story and is waiting for Amy to give her a sign to show she’s watching over her. She says: ‘Amy defied the doctors for 21 years and I am grateful for every second I spent with her. All I can do now is wait; come and see me soon Looby Loo.’

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