For children like Sienna who are fed using a tube, the only option out there for a backpack to carry their food and pump is " black, bulky, and way too technical".

So when she asked for a new backpack for her eighth birthday, her mum Mandy, 30, thought it would be great to buy her daughter a normal backpack and get a friend to help adapt it to hold the necessary tubes and pump.

When Sienna realised what her mum and her friends were doing, she used her birthday money to buy nine more bags so her friends in hospital could also have a normal backpack.

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One of the recipients of a backpack, Megan, has complex heart disease and neutropenia

In less than a month, the small project has blossomed into a mini production line where Mandy coordinates and her friends Deanna Stephens, 30, and Debbie Barnes, 33, adapt bags for tube-fed children in their free evenings.

Sienna hasn't even got her backpack yet as she wants all her friends to get one first.

Buying an adapted backpack can cost around £70 to £80, an added cost for families already spending more to care for their disabled children.

Mandy, who lives in Hammersmith and Fulham, told MyLondon that the available backpacks for these kids are "just awful".

"I've tried to buy an adaptive backpack for years," she said.

"But the choice for the kids has always been very limited.

"Anything with the word 'adaptive' in front goes through the roof."

The women at Backpacks for Tubie Heroes, as they call their project, buy normal kids' backpacks for cheap online and convert them to hold the tubes, pump, and feed these children need.

They have managed to bring the cost down to £15 for a toddler bag and around £20 for an adapted bag for an older child and fundraise so they can give the bags away for free.

The team has sent out 39 bags so far with another batch of 24 in the works.

Now they're looking to continue to expand and enlist more people to help with the adaptions as demand has been higher than they expected.

"We posted and it just spiralled and we realised how much of a need they were," Mandy explained.

These bags are popular with children

At the heart of the project is Sienna.

"It makes her feel less different as there's this whole community of children with a pump," said Mandy.

"Now they are all talking and sharing their stories. It's bringing everyone together."

Sienna was born with c ongenital diaphragmatic hernia where the abdominal organs can move up into the chest cavity and restrict lung growth, as well as complex congenital heart disease, which required open-heart surgery, and gut dysmotility.

She has spent half her life in hospital and has been tube fed since birth - either IV nutrition via a central line into her bloodstream or milk feeds via a feeding pump.

She has had bowel sepsis numerous times and must go to hospital as soon as she gets a fever or cold.

"She's been through a lot but she's the happiest child ever," said Mandy with pride.

"She is a delight. We try to give her the most normal life we can give her."

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She has noticed that as Sienna is getting older she is becoming more aware of the differences between her and other children, so having a normal-looking backpack is really important to her.

The backpacks provide these kids with "independence and the freedom of choice".

Some kids will wear their backpacks for 12 hours or even all day.

Sienna wears hers for the first half of school then switches to a different backpack for other feed.

The Backpacks for Tubie Heroes bags are designed so that the milk hangs from a hook in the back of the bag so it can run over a long period of time.

Then there's a wire that goes through the front pocket and the pump sits there, leaving space in the back of the bag for normal school things.

Finally, there's a hole at the back of the bag so the tube can come out of the hole directly into the child's tube, whether that's one connected to their stomach or nose.

Positive feedback is already coming in, with one 16-year-old girl saying the bags are adapted "perfectly" so that she no longer needs three bags and that it feels "more like an ordinary backpack".

You can check out Backpacks for Tubie Heroes here or view their GoFundMe here.

Do you have a story you think we should be covering? If so, emailseren.hughes@reachplc.com

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