In Honor of Ava Louise

Honoring Baby Ava

Ava had a condition called Allagiles syndrome that affected her liver, and meant she needed a liver transplant. 

Allagile syndrome is a rare disease, a autosomal dominant, genetic disorder associated with liver, heart, eye and skeletal abnormalities, facial features and more. ALGS fighters may have a combination or severity of these symptoms, making ALGS one of the most difficult diseases to diagnose or treat. 

Ava Louise really was the miracle baby of the family, a cryptic baby. 

Us a family had the privilege to spend 3 whole weeks with Ava before her transplant journey began, all thanks to Ava’s consultant Murumbo. 

Ava’s transplant journey began on the 29th December 2021 at The Leeds Children’s Hospital. Ava’s transplant took place on the 26th May. Ava’s mum Hannah donated a part of her liver to save her baby girl's life. 

Before the transplant Ava fought through many battles which she over come with such strength. These were Kasai Surgery; Broviac Lineinsurgen, Parental Nutrition, Ecoli Infections, Endoscopy and Blood Transfusions. 

As a family we had our first scare on Tuesday 31st May, where mum, Hannah and dad, Lewis had a call that Ava was having a cardiac arrest where we lost her for 4 minutes. 

Ava Louise sadly took her last breaths at 2.00am on Wednesday 1st June, with both grandparents there, Grandma Sarah, Grandad Dave, Grandma Sharon, mummy Hannah and Daddy Lewis. 

Auntie Sammie, Chloe and Santana shortly after arrived to say their goodbyes. 

Ava Louise was the happiest, smiliest, sassiest baby despite of her condition.