Heartbroken Swan Hill parents prepare for funeral of ‘cheeky’ little boy with rare diagnosis

A young boy who tragically died after losing a six-year battle with an incredibly rare medical condition has been remembered for his “cheeky” smile and love of Mickey Mouse.

Xavier Fallon was remembered for his love of life and cheeky smile. Picture: Supplied.

A heartbroken couple have been left planning the funeral of their little boy after he died following a long battle with an incredibly rare medical condition.

Swan Hill boy Xavier Fallon died aged six on Monday at Bendigo Hospital.

The “young warrior” had been in and out of the Royal Children’s Hospital from a very young age after he was diagnosed with extremely rare progressive metabolic condition 2M3HBA deficiency.

Children with the deficiency experience difficulty moving their muscles, loss of developmental milestones and seizures.

Despite the challenges, his parents Trimeaka Neill and Billy Fallon treated him like a “normal little boy” and never let their son’s disability get in the way of him living a “full and happy life”.

Swan Hill boy Xavier Fallon died at the age of six on Monday at Bendigo Hospital. Picture: Supplied.

“Xavier was always a happy little boy, he loved to giggle,” Ms Neill said.

“Even through his fight over the last six-and-a-half years he always had a smile on his face.

“He always laughed at the silly little things.”

Xavier’s parents knew this day would come from the moment he was diagnosed with the rare condition, but never let that get in the way of loving every moment with him.

“He fought all the way to the end. That’s the boy that everyone knows and everyone loves,” Ms Neill said.

Xavier loved going to school, Mickey Mouse and interacting with others in “his own little way”.

“When I say he loved Mickey Mouse, he LOVED Mickey Mouse. Everything we have of Xavier’s is Mickey Mouse related,” Ms Neil said.

Ms Neill said they were keeping it together after losing Xavier for his 21-month-old little sister Felicity.

“He just loved her,” Ms Neill said.

“He let her jump all over him and climb all over him and let her be a kid.”

Now a friend of the family Rebecca Poyner has started a GoFundMe to raise $10,000 to pay for Xavier’s funeral costs.

“The costs of a funeral can be daunting enough, let alone having to bury your 6-year-old child,” she said.

“Please, if you have a moment and any funds to spare, help out this beautiful family by taking the financial burden away.”