Newspaper article Daily News (Warwick, Australia)

Family's Heartbreak; Baby Boy Has Been Diagnosed with Incurable Disease

Newspaper article Daily News (Warwick, Australia)

Family's Heartbreak; Baby Boy Has Been Diagnosed with Incurable Disease

Article excerpt

Byline: Jonno Colfs

WHEN Malakhai Riley was seven months old, his mum Cassie Lamos noticed something was not right with her little boy. She could never have prepared herself for what was to follow.

Two weeks ago, the 13-month old Warwick boy was finally diagnosed with Niemann-Pick Type A, an extremely rare incurable disease.

Malakhai is the only known person in the country with the disease and doctors say he may live to two or three years old, but could die within months.

Niemann-Pick Type A is a genetic storage disorder disease, which means fat is not distributed throughout Malakhai's body to assist normal growth, but is localised to the liver and spleen, causing irreparable damage to these and other organs, as well the child's nervous system.

His mother is shattered.

"About six months ago I had a gut feeling that something was very wrong," Miss Lamos said.

"His stomach was all bloated and he simply wasn't growing and as time went on he wasn't reaching normal developmental milestones, like sitting and crawling."

In April this year, a concerned doctor referred Miss Lamos to a paediatrician at the Warwick Hospital.

Blood tests ruled out the obvious possible diagnoses and Malakhai was referred on to Lady Cilento's Children's Hospital in Brisbane for further testing.

Here the young boy was subjected to a range of tests from the hospital's metabolic team before a diagnosis finally came back in mid August.

"Leading up to the diagnosis I went through a huge amount of emotions," Miss Lamos said.

"I didn't want him to have a life-threatening condition, but deep down it was clear something was wrong.

"I was so stressed and worried, not knowing if my little man was going to go before me, it's been horrible and I'd never wish it on anyone."

When the diagnosis finally arrived, Miss Lamos said it broke her heart beyond repair.

"It was a blur, I felt completely numb to hear the worst possible outcome and there was nothing I could do to change it," she said.

"Nothing but bad news, although there was some comfort in the fact the hospital staff will be there every step of the way. …

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