A DEVASTATED mum has revealed how she found out her daughter had planned own funeral when she passed away at 21 – right down to the small details like coffin colour.
Lyn Eades, 45, from New Addington, Croydon, was left shattered when her daughter Amy passed away after a life-long struggle with Cystic Fibrosis.
It was only when she was going through her iPad after her death that she made the heartbreaking discovery that Amy had gone to great lengths to plan every detail of her funeral.
Amy was diagnosed with the life-shortening genetic condition – that causes sticky mucus to build up in the lungs and digestive system – at just six weeks old after failing to put on weight.
Lyn said: “Amy’s dad and I both carried the CF gene. ‘Take Amy home, enjoy her,’ the doctor said, handing us several leaflets.
“But what does that mean, I thought, confused.”
From that moment, Amy needed regular physio to clear her lungs, and after reading up about sufferers battling constant infections and needed transplants, it soon dawned on Lyn how serious CF was.
Lyn said: “At her first appointment, the doctor gave me the worst case scenario. ‘Cystic fibrosis is life-shortening,’ he said.
“In that moment, I knew that one day I’d have to bury my baby girl. It was too much to take in.
“I vowed to make Amy’s life the best I could, however long it was.”
Lyn’s every waking minute was dedicated to Amy whose life consisted of hospital appointments, a cocktail of medicines, inhalers, injections, nebulisers and physio.
And one of worst aspects, however, was ignorant parents, who thought the condition was contagious and refused to invite her to birthday parties.
Lyn went on to have Sam, now 20, and Jessica, now 18, and her children formed a fantastic bond.
The mum tried to make their lives as normal as possible by taking them on days out and away for the occasional holiday.
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But the seriousness of the situation really hit home when Amy was 10 and 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.
Amazingly, Amy defied the doctors and despite many hospital admissions and being in constant pain, she was a happy-go-lucky girl with eccentric fashion sense.
Lyn said: “Determined to stand out for something other than CF, she dyed her hair an array of colours.”
Then, just when Amy seemed to be doing better than ever last year – 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.
She said: “It’s different this time mum.”
Despite Lyn reassuring her that she would fine, Amy was soon coughing up blood and needed antibiotics, physio and a machine to help her breathe.
With a hole in Amy’s lung, doctors told the family that they were “fighting a losing battle.”
The close-knit family met the news head on and Amy told her mum: “I want a leopard-print coffin.”
She also told sister Jess that she wanted Phil Collins’ On My Way played at her funeral, and everyone to wear an item of matching leopard-print clothing.
During her last days, Lyn was heartbroken to read Amy had posted on Facebook saying: “I feel life slipping away but I don’t want to give up.”
Then on May 1 last year, she became very sleepy and told Lyn: “I’m going to sleep now.”
Lyn said: “She didn’t wake up again. My girl slipped away surrounded by family. My heart shattered.”
Scrolling through Amy’s iPad when she got back home, Lyn found her funeral research and vowed to give her the send-off she wanted.
What is cystic fibrosis?
Cystic fibrosis (CF) is a genetic condition affecting more than 10,800 people in the UK, according to the Cystic Fibrosis Trust.
The condition is one sufferer’s are born with, it cannot be caught or develop later in life.
One in 25 of us carries the faulty gene that causes the condition – often without even knowing.
How does CF affect sufferers?
The faulty gene affected by CF controls the movement of salt and water in and out of cells.
It means people with CF experience a build-up of thick sticky mucus in the lungs, digestive system and other organs.
It causes a wide range of challenging symptoms, that affect the entire body.
While sufferers may appear healthy from the outside, each individual is battling their own life-changing symptoms every day.
The build-up of mucus in the lungs causes chronic infections, that can cause reduced lung function.
Is there a cure?
While there is no cure for CF, sufferers will spend hours each day in physiotherapy, and taking nebulised treatments each day.
In severe cases people can be told a lung transplant is their last option.
Source: Cystic Fibrosis Trust
On the day, Amy was carried in a leopard-print coffin, with everyone donning an item of leopard-print clothing at her request.
She was dressed in a Legend of Zelda Elf costume and afterwards everyone said goodbye by releasing leopard-print balloons.
Lyn said: “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.”