A Singapore Case Study


He needs to be fed milk every three hours and turned regularly in bed so he doesn't develop sores. But grand-aunt & grand-uncle who care for boy of divorced parents say:
November 07, 2006

HE can't see, he can't hear, he can't speak. And he is bedridden.

Rizan Riski, 15( now 17), has adrenoleukodystrophy (ALD), a rare genetic disorder.

Worse still, he has been living in this condition without the nurturing care of his parents.

They were divorced when he was just a year old.

His mother left the family soon after the divorce and has not come back. His father doesn't live with him, although he visits him regularly.

Instead, Rizan lives in Bukit Batok with a couple, Mr Morjid Sahmar, 67, and his wife, Madam Hatimah Eksan, 58.

Madam Hatimah is the sister of Rizan's maternal grandmother, who had died by the time Rizan's parents were divorced.

The couple treats him as one of their own grandchildren and has been looking after him since his parents' divorce, reported Berita Minggu.

That was long before he was struck by the crippling disorder at age 7 that has left him unaware of his surroundings.

ALD damages nerves in the brain and the adrenal glands, which are located just above the kidneys. His particular ALD affects only boys.

While his head turns as his eyes flit about, as if noting the goings-on in the bedroom, Rizan actually can neither see nor hear.

Although his body continues to develop into adolescence, his muscles have wasted. His arms and legs lie limp and appear bent from years of disuse.




'We have tried everything to treat Rizan, but till today there hasn't been any improvement,' said Mr Morjid, a supervisor at the Singapore Turf Club.

He said that he and his wife noticed some improvement five years ago when they engaged an Indonesian man to massage Rizan for two months.

Unfortunately, the medicine man himself fell ill when he returned to Indonesia and could not continue treating Rizan, Mr Morjid said.

Every day Mr Morjid and Madam Hatimah would bathe the boy or towel him down. They turn him over regularly so that he doesn't develop bedsores.

AIR-CONDITIONER

They have even installed an air-conditioner in the bedroom for Rizan's comfort.

Rizan is fed milk every three hours through a tube that runs through his nose.

Everyone in the household and other relatives, including Madam Hatimah's siblings, pitch in to look after Rizan.

An ambulance takes him to the hospital for his monthly checks or when he develops a fever.

But the family takes its daily care-giving tasks in stride.

'A burden? No, we don't see Rizan as a burden. It's not as if he asked to be sick,' said Madam Hatimah with a smile.

When Rizan was a healthy boy, he was very active, she said.

'He loved to jump here and there,' recalled Madam Hatimah. 'And he spoke a lot in English.'

'But when he fell ill and slowly weakened, he spent most of his time lying down. And he often cried.'

He was ready to start primary school when the family noticed changes in him.

His handwriting started deteriorating.

Madam Hatimah said: 'Then one day, he said his grand-uncle's face looked 'different'.

'And he became less stable when walking; he was always knocking into things.'

Members of the Qaryah, a mosque network which helps Muslims within a community, and the Malay Activity Executive Committee in Bukit Batok recently visited the couple.

Only 17,000 in world have disease

ALD, or adrenoleukodystrophy, is a rare disorder that afflicts some 17,000 people in the world.

Those with the disorder cannot produce an enzyme that breaks down certain types of fatty acids in the brain and the adrenal gland, Dr Stacey Tay, a consultant at the neurological division of National University Hospital's paediatrics department, told Berita Minggu.

Children with ALD have it worse than adult sufferers.

They develop it between the ages of 4 and 10, and are not expected to survive 10 years after the first signs appear.

One of the obvious signs is a change in the behaviour of the sufferer - he may keep more to himself or appear violent.

He may also suffer memory loss and his schoolwork may deteriorate. Other signs include loss of sight and hearing, memory loss, learning difficulties, weakened muscles, lethargy, difficulty in swallowing and walking, vomitting and a darkening of the skin.

In adults, the signs begin to show between the ages of 21 and 35. They include slow bodily responses, lethargy, awkward gait and paralysis in the legs.

The disease is genetic.

Hormone treatments have been known to help save the lives of ALD patients. And recent research has shown that a combination of oils known as Lorenzo's Oil has helped boys who have the disease.

taken from: http://www.sgclub.com/singapore/he_not_burden_809.html


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