ALTHOUGH six-month-old Alexander Kneen-Beck was given only months to live, his parents hoped he would be here for at least one Christmas.
Alexander was born two months premature on June 9 and died on Tuesday after only being home for one week and one day.
He was born with a genetic defect x-linked myotublar myopathy.
X-linked myotubular myopathy is a condition that affects muscles used for movement and occurs almost exclusively in males.
People with this condition have muscle weakness and decreased muscle tone that can be evident at birth.
His mum Courtney Beck also lost a little brother to the condition more than 15 years ago.
Ms Beck and her partner Adrien Kneen lived in Toowoomba but when Alexander was born they were moved to the Ronald McDonald House while their newborn son was at the Marter Mothers' Hospital and Lady Cilento Children's Hospital.
The doctors gave Alexander three months to live but he exceeded expectations and lived to just over six months.
The family was given the all-clear to take him home last week and they were preparing for their first Christmas together, when he passed away in the early hours of Tuesday morning.
Ms Beck said she woke up beside him and realised he had passed away.
"He was my first child and it is really hard knowing he is gone," she said.
"He was such a bright and happy boy who never showed any sign of pain.
"The doctors told me that if I have another child there is a 50% chance of them carrying the gene as well."
Close family friend Connie-Anne Cottee said the family was understandably distraught.
"Although they were given a few extra months, it was never going to be enough," she said.
"For him to be alive as long as he was is something we will all cherish."
Ms Cottee has started a GoFundMe page to raise funds to help pay for funeral.
"I only opened the page a day ago and already so many people are showing their support," she said.
Ms Cottee soon plans to raise awareness and funds for X-linked myotubular myopathy.
If you would like to help visit gofundme.com/helping -beck-familyalexs-funeral.
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