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Family thank community for supporting Ava

The Hosier family

The Hosier family

A heartbroken family has thanked the community for their support during their daughter’s battle with a rare metabolic disorder.

Ava Nicole Hosier died at the Forget Me Not Children’s Hospice after being diagnosed with congenital disorder of glycosylation, a condition which affects around 800 people in the world.

The disease caused her to suffer up to 30 seizures a day, impaired her vision and hearing and Ava needed to be fed through a tube.

She tragically passed away last Wednesday, a week before her first birthday.

Her parents, Shaun and Emma, had been trying desperately to raise enough money to pay for a family trip to Disneyland, which they hoped to go on later this month.

The couple, of Spring Mill Grove, Batley, said they appreciated the support of the local community, who helped raise more than £3,800.

Mrs Hosier said: “We want to thank everyone who helped raise money. It means a lot to us. She really touched a lot of people and I think she made a lot of people realise how special life is.

“Ava’s condition meant she lost her smile after a couple of months but you could always see it behind her eyes.”

Mr Hosier added: “She was a perfect little baby and she touched so many peoples’ lives in the short time we had with her.”

The community held numerous fundraisers, including a football match, coffee morning and a car wash.

Mrs Hosier’s childhood friend, Katie Collett, organised a Disney-themed day at Deco Bar, in Batley, which helped raise funds for Ava.

Mrs Hosier said: “Unfortunately Ava’s condition had deteriorated quite quickly so she could not go but we all dressed up for it. We visited for a bit and the turnout was amazing.

“One man walked up to Shaun with a cheque for £200 and we did not even know him. People were so generous.”

Ava was taken to the Forget Me Not Children’s Hospice a couple of weeks ago after her condition worsened.

Doctors only diagnosed her with the disease in January, because it is so rare.

Her parents were told Ava had 18 months to live, but she passed just weeks before the trip to Disneyland.

The couple paid tribute to the staff, who helped Ava with her condition.

Mr Hosier said: “Staff at the hospice have been fantastic. We have also been to Martin House Hospice and the nurses at the children’s ward at Dewsbury District Hospital were great.

“The hospices are such magical places and they do not get enough recognition for what they do.”

The couple and their two other children, Ryan Shaun, five, and two-year-old Taylor Jack, marked Ava’s birthday by releasing lanterns from their garden yesterday night.

Her funeral will take place at Holy Spirit Church in Heckmondwike tomorrow, from 11am.

 

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