A Darlington family has paid tribute to their “lovely, happy boy” after he lost his fight against a rare genetic condition.

Asa Burnside was born on March 26 2020 and was diagnosed with Niemann-Pick Type A shortly after.

The incurable neurological condition affects the body’s ability to metabolise fat cells and the condition is mainly found in infants.

The “beautiful little boy” died at home in Haughton, Darlington, surrounded by his mum Elizabeth, his dad Joe, his sister Elizabeth, sister Julianna, and brother Joe, at home on Sunday, October 23.

The Northern Echo: Asa suffered from Niemann-Pick Type A Asa suffered from Niemann-Pick Type A (Image: Family photos)

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Asa’s uncle, Gilbert Maguire, who lives in Hurworth, described his young nephew as being “the happiest little baby you’ve ever seen”, “always happy, smiling and kicking his legs”, and “an inspiration.”

£100,000 was raised for little Asa by Mr Maguire who walked 100 kilometres last summer to raise awareness about the little-known fatal condition with the proceeds donated to Niemann-Pick UK.

Although Asa’s family knew that little could be done for him, they hoped that by raising awareness, in the future other children with the condition could have a different outcome.

Mr Maguire walked 100km from Berwick to Longhorsley in Northumberland with supporters joining him for parts of the journey which took over 26 hours in total.

The Northern Echo: Asa was described as always happy, always smilingAsa was described as always happy, always smiling (Image: Sarah Caldecott, Newsquest)

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He added that in those moments he felt difficult, thinking about his little nephew made him push on.

“He was just a lovely little boy, sweet and happy,” he said.

“Even though we were expecting it (Asa’s death) it still hit us all like a tonne of bricks. Nothing could’ve prepared us for this.

“I know he’s no longer suffering but we’ll all miss him so much and his parents, Joe and Elizabeth, have been amazing. They raised their other three kids with all this going on in the background.

“They’re such a strong family, and Asa was such a strong little boy.

“Asa was so full of love, he wouldn’t take his eyes off his mam and would always kiss his dad’s cheek.”

The Northern Echo: Asa with his mother, ElizabethAsa with his mother, Elizabeth (Image: Family photos)

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Elizabeth and Joe, Asa’s parents, knew they only had a limited amount of time with their youngest child and so they made the most of it by going on trips. They went to Spain, and Asa’s sister Julianna recalls how much he loved playing in the sand.

The sweet little boy adored eating chocolate buttons and loved watching films such as Toy Story and Finding Nemo with his brother Joe.

Although just two and a half, Asa had bags of personality and will be a real loss to the community.

The youngster started to regress a few weeks ago and was on daily morphine as his symptoms became more intense.

The illness is currently incurable, there is no treatment beyond palliative care, and children with the condition rarely live beyond the age of three.

Mr Maguire added: “He was in everyone’s thoughts, everyone’s prayers, and everyone’s hearts.”

Asa’s funeral will take place tomorrow morning (Tuesday, November 8) at St Cuthbert’s Church in Darlington at 11am.

The Northern Echo: Asa and his mother, ElizabethAsa and his mother, Elizabeth (Image: Family photos)

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