Malakhai Riley (2016-2018) was an amazing fighter and his mother's
Malakhai Riley (2016-2018) was an amazing fighter and his mother's "little man". Contributed

MOTHER: 'Time was right to let my baby boy go'

MAKING the decision to let her little boy go was the hardest thing Cassie Lamos will ever do.

On August 28, with his small head in her arms, Miss Lamos decided to refuse treatment for her two-year-old son.

She was scared, but certain.

Just a couple of days earlier the young family had been on holidays at the Gold Coast, when Malakhai fell ill with a cold.

To most, the infection would be nothing more than a minor setback but, on top of his rare genetic disease, it was the last of what Malakhai could handle.

"His little body could not cope any more," Miss Lamos said. "He was weak and he was in severe pain."

In 2016, only a few months old, Malakhai was diagnosed with Niemann-Pick Type A.

Miss Lamos had just moved to Warwick to settle down when the diagnosis came.

Malakhai was the only known person in Australia with the disease at the time.


Malakhai Riley (2016-2018) was an amazing fighter and his mother's
CHERISHED: Malakhai Riley (2016-2018) was a light to brother Khoen and sister Amelia, who are coping well since he passed away two weeks ago. Contributed

The illness affected fat distribution throughout Malakhai's body, causing lipid build-up in his liver and spleen and irreparable damage to his organs and nervous system.

But the suffering didn't stop Malakhai and his family from making the most of life.

"He was very bossy and he got what he wanted but he was always happy and never cried," she said.

"He was amazing to deal with all this."

Knowing his time on Earth would be cut short, every hug, kiss and laugh became a memory Miss Lamos cherished.

But the journey has shown Miss Lamos her own bravery too.

"Malakhai has brought out a strength in me I never knew I had," she said.


Malakhai Riley (2016-2018) was an amazing fighter and his mother's
Malakhai will be remembered as an amazing and "cheeky" young child who won the hearts of so many Contributed

"I didn't know I had it in me to be able to care for him the way I did and try to run our normal life for my family."

With two other children, Amelia, 9, and Khoen, 4, Miss Lamos discovered just how big a mother's heart could be.

"He taught me never to take life for granted, make the most of what you have got and live in the moment," she said.

When the time came for Malakhai to move on from the world, Miss Lamos knew it was right.

"I made the choice to let him go peacefully at the hospital," she said.

"I couldn't see him suffer any more and I knew it was for the best. It would have been selfish to keep him going."


Malakhai Riley (2016-2018) was an amazing fighter and his mother's
Malakhai was diagnosed with a rare disease, but still enjoyed his first two years of life and touched hearts before passing away in his mother's arms. Contributed

Warwick resident and close friend Marie Jobson said the community had rallied behind Miss Lamos.

"The pubs here helped, the aerodrome put in a donation and the daycare centre did as well," Ms Jobson said.

"Cassie has done it tough but ... she did have a lot of support behind her."

Although she had to move away to be closer to specialist care for Malakhai, Miss Lamos said she would always hold Warwick close to her heart.

"Just thank you to every-body that took the time to understand Malakhai and understand the disease and everybody getting together when they did," she said.

Offering a message to other parents, Miss Lamos said to follow your gut instinct.

"If you feel and know there isn't something quite right with your child or baby, you push and push until you get to the bottom of it," she said.

"Never back down, never give up."