Without saying a word Hugo Barnhurst could light up a room.
In his 10 years he touched many lives, with his comical nature and infectious smile.
Mum Abby Barnhurst said this became apparent to her and father Richard at Hugo’s funeral, just a few months after his 10th birthday.
Hugo was born with mitochondrial disease, which prevented him from talking and walking.
In October last year, during a family holiday to America with his parents and older brother Joshua, his condition began to deteriorate.
“I thought Hugo was just jet lagged … he was so lethargic,” Abby said.
“Little did I know, it was already happening, this disease was showing its ugly head.”
In the months that followed Hugo was in and out of the Sunshine Coast University Hospital’s intensive care unit.
On February 24 – after 84 days in hospital – Abby and Richard made the hardest decision of their lives, to turn off the ventilator allowing their son to breathe.
Abby said Hugo was remembered as a happy boy who could put a smile on anyone’s face.
They planned a small funeral, but quickly learned many nurses and Currimundi Special School teachers wanted to attend.
The British International School in Phuket which Hugo attended for his first primary school years planted a tree in his honour.
Abby said Hugo loved to eat, sing and dance and go for family drives or boating.
“As a family I think what this has taught us is not to neglect quality time,” Abby said.
“Hugo was quite comical and was always trying to make us laugh in his own little ways.”
The family moved to the Sunshine Coast from Phuket in June last year to have better access to health services.
Abby said she was grateful for the public hospital and Wishlist’s in-hospital Family Retreat so they had a room to be close to Hugo in his final months.
Written by Tegan Annett – Sunshine Coast Daily. 27th May 2020.