Family rallying round grieving parents of baby who died from rare condition in Leeds Children's Hospital

The family of a baby girl who died in Leeds Children's Hospital is rallying to raise awareness of the rare condition she had and support her grieving parents.

Ava Louise Brittain-Muskett was born in September 2021 but tests conducted early on revealed she had alagille syndrome, a genetic disorder which affects different parts of the body.

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The condition can cause damage to the liver and Ava found herself in need of a liver transplant, which her mum Hannah Muskett enabled by donating part of her own.

Whilst Ava was being treated, her mum created a Facebook page called 'Ava's liver journey' and provided regular updates on her condition.

Although the transplant was initially a success, Ava's kidney began failing and she went on to have three cardiac arrests.

She died on 1 June before reaching nine months old after her third cardiac arrest and two fundraisers have since been set up in her memory.

Writing on the GoFundMe page set up to support Ava's parents, her aunty Samantha Brittain said: "She was loved dearly by all her family and both families are broken, life will never be the same without her infectious smile and beautiful face."

Speaking to the YEP, Samantha added: "They were resuscitating her for an hour and obviously they just said 'we can't do any more'.

Ava died on 1 June after her third cardiac arrest and two fundraisers have since been set up in her memory.

"Both grandparents were there from both mum and dad, and then me and my sister followed later on and we all said goodbye."

The first fundraiser is aiming to have something special made with Ava's ashes for her mum Hannah and dad Lewis Brittain.

Ideas include placing Ava's ashes in a ring or necklace, or having a tattoo with her ashes in the ink.

If enough money is raised, they also want to create a memorial which loved ones can visit.

The second fundraiser involves friends and family tackling the Three Peaks Challenge to raise money for Alagille Syndrome Alliance and raise awareness of the condition.

Ava's family recently honoured her by turning the sky pink with the release of balloons and fireworks, and are planning to continue paying their respects with the fundraising efforts.

The family are from Manchester but Ava's parents, who both turned 21 in May, were based in Leeds whilst she was cared for by Leeds Children's Hospital.

Whilst Ava was being treated, her mum created a Facebook page called 'Ava's liver journey' and provided regular updates on her condition.

Samantha said: "A lot of people followed Ava's journey, so I think a lot of people have been touched by it.

"The memorial isn't just for us, it's for other people that followed Ava as well."

The donation page for the Three Peaks challenge can be visited here, meanwhile the GoFundMe page set up to support Ava's parents by creating something special in her memory can be accessed here.

To view the 'Ava's liver journey' Facebook page, click here.