Tributes paid to Darlington boy, 2, following death from rare genetic disease Niemann-Pick

Asa Burnside, two, was described as a "perfect little boy" by his family. Credit: Family

Tributes have been paid to a “perfect little boy” who has died following an illness.

Darlington two-year-old Asa Burnside, who was diagnosed with a rare genetic disease Niemann-Pick when he was months old, died last month.

His plight inspired his uncle Gilbert Maguire to walk 100 kilometres in less than 24 hours in June to raise more than £100,000 for the charity Niemann-Pick UK.

Asa’s funeral will take place at St Cuthbert’s Church, Darlington on Tuesday 8 November.

Asa was born on 26 March 2020, just days into the first national lockdown. It meant mum Elizabeth and dad Joe were able to spend every moment with him in his early weeks and months.

Asa, who had a “big smile” and piercing blue eyes, loved watching films like Toy Story and Finding Nemo and eating chocolate with his siblings Joe, Elizabeth and Julianna.

Paying tribute to the youngster, his family described him as a "perfect little boy" with an infectious smile and hearty laugh. They said: “As time went on Asa became more poorly and everything just became the new norm but he took everything in his stride.

“He was the strongest little boy there is.

“Even though Asa didn’t speak much, he loved so much. He wouldn’t take his eyes off his mam and would always kiss his dad’s cheek.”

Asa and his uncle Gilbert Maguire, who helped raise more than £100,000 for research into the rare condition which killed him. Credit: Family

They added: “He was such a special little boy that touched the lives of some many people, not just in his own town but all around the world.

"When you mentioned Asa’s name everyone knew about him. He was in everyone's thoughts, everyone's prayers and everyone’s hearts.”

Mr Maguire raised more than £100,000 for research into the disease after walking 100km along the Northumberland coastline.

The feat meant he was nominated for a Pride of Britain award by ITV Tyne Tees.

The money raised went to the charity Niemann-Pick UK, which supports families and is carrying out research into the little-known disease, which is a neurological condition which means people with it cannot metabolise fats.

It is currently incurable, has no treatment beyond palliative care and children with the condition rarely have a life expectancy of more than three years.

Asa's funeral takes place on Tuesday 8 November at 11am at St Cuthbert’s Church, Market Place, Darlington.


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