23:45, April 2, 2012

Harutyun Sukiasyan is an active five year-old who wants to be a soldier when he grows up.

The boy also suffers from CF (Cystic fibrosis).  Most kids so diagnosed in Armenia don’t make it past the age of twenty.

It is a genetic disease affecting most critically the lungs, and also the pancreas, liver, and intestine. it is characterized by abnormal transport of chloride and sodium across the epithelium tissue, leading to thick, viscous secretions.

In 1959, the median age of survival of children with cystic fibrosis in the U.S. was six months. now, it is 37.4 years. In Canada, median survival increased from 24 years in 1982 to 47.7 in 2007.

Harutyun, his mother Svetlana and sister Srbuhie live with relatives in the #2 Section of Nork, Yerevan. Svetlana is divorced.

Eight people live in a damp one room apartment. Harutyun sleeps on the floor next to his mom.

The little boy’s coughing spells have gotten worse of late and his loss of sensitivity has increased.

Srbuhie is also sick. Svetlana has placed her in the care of a boarding school so that the girl can be properly fed and have a bed to sleep in. Srbuhie visits the family on the weekend.

Svetlana told me that Harutyun first started manifesting symptoms of the disease at the age of six months. at first, doctors couldn’t make a proper diagnosis.

It was only months later that doctors in Armenia diagnosed MS and told the mother that the disease was curable and wasn’t life threatening.

According to Wikipedia – while there are no cures for cystic fibrosis there are several treatment methods. the management of cystic fibrosis has improved significantly over the past 70 years. while infants born with cystic fibrosis 70 years ago would have been unlikely to live beyond their first year, infants today are likely to live well into adulthood. Recent advances in the treatment of cystic fibrosis have meant that an individual with cystic fibrosis can live a fuller life less encumbered by their condition.

Svetlana had to wait another three years before the health authorities registered the boy as “disabled”. (In Armenian – hashmandam. there are various degrees of disability in Armenia with each allowing for various pensions and treatment payments.)

She says that her son was never prescribed any medication for three years. now he receives Creon and some vitamins.

(Creon contains digestive enzymes and is used to improve food digestion in people who cannot digest food properly)

“the last time Harutyun got the drug was in January. But the medication had already expired. I threw it in the garbage. In February, the polyclinic gave us the drug but it was the wrong dosage. I had to cut it up,” says the mother.

If he doesn’t take the drug before eating, he will throw up the food two or three minutes later.

Family physician Marina Gasparyan at the #14 Polyclinic in Yerevan says that the drug hadn’t expired, but does admit that the wrong dosage had been given afterwards.

Gasparyan says that they are doing all they can to assist, allocating drugs and vitamins.

The nebulizer Harutyun was using to take the drugs no longer works. the family can’t afford to purchase a new one.

All eight people survive on the 50,000 AMD ($129) pension of Svetlana’s mother.

Harutyun’s disability pension is only enough to buy some rice and macaroni. the boy has asked for some fruit for the past week, but Svetlana can’t afford any.

“I just don’t know how long my boy can live in these conditions. He’s not getting the nutrition he needs and the apartment makes matters worse. my priority is to get him out of here somehow and to provide sufficient meals,” said Svetlana.

She’s worked in stores and cafes as a clerk and waitress. But the jobs don’t last long.

When her employer finds out that she’s a single mom with a sick child, they fire her. they just don’t want the hassle.

As we were leaving, Harutyun turned and told us to visit him in the hospital.

“we don’t have a home of our own,” the little boy remarked.