Cooper family from Bidford launch Gofundme for vital medical equipment after loss of baby daughter Autumn to Edwards’ Syndrome at 16 months

“EMBRACE your loved ones, because you can’t get them back.”

That was the powerful advice of a Bidford father whose baby daughter, Autumn, died in February of a rare genetic disease aged just 16 months.

Phil Cooper, his wife Sam and daughter Robyn, aged nine, are now fundraising to buy portable breathing equipment for the hospital that cared for Autumn, who had Edwards’ syndrome.

The disease, which is caused by an extra chromosome in the body’s cells, can impact the heart and kidneys as well as cause problems with breathing and digestion. Autumn was not expected to live very long and, as reported by the Herald in July last year, her parents were told to say their goodbyes as there is no cure.

However, after being cared for at Autumn battled on at the Worcester Royal Hospital and eventually, Phil and Sam took their baby back to the family home in Bidford.

“Autumn amazed consultants, doctors and a lot of people by her sheer determination,” Phil told the Herald. “Even at such a young age you could see that she had just such a love for life and people around her.

“We’ve been blessed that everyone around us has interacted with her, had the opportunity to meet her, has only ever been around her with smiles and good thoughts and just a happy environment, which we always wanted.”

The family wants to make a difference for other parents whose children are struggling with illness.

“We thought, for her, let’s try to give other people the same opportunity that she had, and the only thing we can really do is try and give people time,” Phil said. “There are children that go into hospital that require what they call high flow oxygen, via an Airvo machine which adds pressure. This takes some of the strain away if a child’s got a chest infection.

“Just having a piece of equipment can make life easier, so if somebody has got an appointment, or they need to be moved to a different ward, or in our case, if you find out that there’s nothing more they can do and you want to try and get them into that loving environment of home, you need something that’s portable that can make that transition both quicker and easier.”

He added: “I think that, as parents, the selfish part of us will always want more time with her… any parent would. My other daughter, Robyn, misses her dearly and she’s been such a brave little girl in understanding it because she’s only nine.

“Time is the only thing you can’t buy, but you can do things to try to inspire and captivate things. You can always make more money, but in some situations you’ll always wish for more time.

“We’ve said that even if people can’t donate, for us – and as part of Autumn’s legacy and journey – we’ve said it still makes us proud to think that our situation could make people go home and re-evaluate and think, ‘You know what, I haven’t embraced my child all week because I’ve been busy with work’.”

The family’s fundraiser to buy portable Airvo3 high flow systems currently sits at over £1,300 with a £4,000 target.

“The equipment that the NHS uses is called an Airvo 2,” explained Phil. “This is a system that provides humidified oxygen, but under pressure. It means if you’ve got a child that’s struggling with a cold or flu and they need that little bit of help, the pressure helps open up their airways, so it makes it easier, so they’re not working as hard.

“The Airvo3 works exactly the same, but it has a battery back-up so that you can transport children between wards.

“If the Airvo3 was available, then there wouldn't be the panic or the worry or the stress. The whole transition is almost easier from a medical point of view and would mean less stress for parents, less worry about whether something’s possible.”

To donate to the ‘Autum Leaf’ fundraiser, visit https://shorturl.at/5knbT.