Qld mother reveals heartbreak over child’s rare disease

Cassie Lamos, 35, learnt just months ago that her youngest child, Malakhai Riley, was suffering from the disease, one she explained was due to a genetic disorder.

A Queensland mother has revealed her son, who suffers from a rare condition – Niemann -Pick Type A disease – is slowly dying from the incurable illness.

Her son, now 16-months-old, is the only known person in Australia with the incurable condition.

Speaking to Daily Mail Australia, Cassie revealed Malakhai’s illness – Niemann-Pick Type A – is triggered through an enzyme deficiency that affects his liver, spleen and central nervous system.

Malakhai Riley (pictured) is is the only known person in Australia with the incurable disease

Mum Cassie Lamos (pictured) with her son who was diagnosed with the incurable condition in August

‘Because of this he can’t sit, crawl, talk or breathe. All he can do is lay on the ground and play,’ she said.

Cassie explained both her and Malakhai’s father were carriers of the gene which causes the disease to develop in the womb, but doesn’t start showing until the child is around three months of age.

While the mum-of-three had her suspicions Malakhai wasn’t developing as he should, it took months of MRI scans and blood testing before he was diagnosed in August.

Though there had been no signs Malakhai had the condition, he started showing some symptoms at six-months-old

She said that Malakhai started showing some symptoms at six-months-old, but she wasn’t aware that he had the condition.

‘I started noticing his stomach being so bloated and he wasn’t meeting his milestones.

‘I had a gut feeling there was something more wrong than what some doctors were first initially thinking.’

Malakhai’s condition is so rare there is nothing available in regards to research or finding a cure, mum Cassie said

Finding out her son was suffering from Niemann-Pick Type A – a condition that could not treated was devastating, Cassie said.

‘It’s so rare there’s nothing there in regards to research in regards to finding a cure.’

She said life expectancy for children with the condition is estimated between 18 months and three years. Right now, Malakhai is just over one, and Cassie is all too aware the family may well be facing heartbreak in the coming months.

The family are doing all they can to make sure the time they have left with Malakhai is as special as possible

‘I have shed plenty of tears, I have had meltdowns, and I have had to explain it to my two older children.

‘Amelia is only eight, and Khoen is only four so they took it pretty hard.

But she said, both children have slowly come to terms their little brother may not be with them for much longer, and are doing all they can to ‘love him that every bit more.’

As for herself, Cassie said, ‘I am doing okay because he hasn’t reached that 18-month mark.’ Doctors have said it’s unlikely Malakhai will live past his third birthday – right now he is just over one

For now Malakhai is on pain medication so he is as comfortable as possible, and recently he had a feeding tube put in his stomach to make sure he is getting enough nutrient-rich food.

What is Niemann Pick disease type A?

The condition prevents fat from being distributed in the body for normal growth. It appears during infancy and is characterised by an enlarged liver and spleen. Other symptoms can include failure to gain weight and grow at the expected rate.

Cassie said that despite the ‘rollercoaster’ of emotions, the family have been doing all they can to make sure each day with Malakhai is special.

‘We do everything together. We go places and do things to make memories.

‘It’s hard because you’ve got to cram everything that you expect to do over a lifetime into three years. But we’re trying,’ she said.

Though the single mum has the support of her family, the community has also rallied to offer their help. On November 25 Goodstart Early Learning Warwick will hold a Family Fun Day to raise much-needed funds for Malakhai and his family.

Speaking to Warwick Daily News centre director Jodi Sweet said the team had a connection to the cause as Malakhai’s older brother was attending Goodstart when he was diagnosed with the disease.

‘When they first started doing tests and everything was up in the air, a lot of educators were very close to the situation.

‘When we finally found out it was very heartbreaking.’

Cassie said tomorrow will be a special day for Malakhai who ‘smiles regardless of what he is going through.’

‘I’ve got my family and friends and the community who have jumped on board to help fund for my son to give him the best life he can have, it’s just amazing.

‘I am forever grateful,’ she concluded.

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