Grisha Balasanyan16:23, November 24, 2011

Lilit should be entering the fifth grade but she’s been left back.

Her medical condition is such that the young girl hardly attends class. Lilit is given to long coughing bouts.

The girl doesn’t seem to mind that much given that she won’t be surrounded by the same classmates that used to make fun of her.

At first, parents and even some teachers thought Lilit suffered from tuberculosis. Recently, physicians have diagnosed something more alarming – cystic fibrosis (mucoviscidosis).

It’s a recessive multi-system genetic disease characterized by abnormal transport of chloride and sodium across epithelium, leading to thick, viscous secretions in the lungs, pancreas, liver, and intestine.

The hallmark symptoms of cystic fibrosis are salty tasting skin poor growth and poor weight gain despite a normal food intake, accumulation of thick, sticky mucus, frequent chest infections and coughing or shortness of breath.

For the past three years Lilit has spent most of her days in hospital under the car of doctors.

Lilit’s aunt, Narineh Sargsyan, says the illness is incurable and that now they are simply trying to prolong the girl’s life expectancy.

When we visited Lilit, one of her coughing spells acted up. Family members were afraid because there was a lot of mucous coming up and the girl was having trouble breathing.

When doctors diagnosed CF and they registered Lilit as “disabled”, they advised the family to purchase a special piece of medical equipment. Medicine would be filled into the unit and Lilit would breathe it in. It’s the only way to bring the girl back to a conscious state in a short time.

But Narineh says the unit must be special ordered and that it costs 60,000 AMD ($170). the family was despondent since they couldn’t afford the life-saving unit but a kindhearted nurse, Satik Arturovna, gave the unit to the family free of charge. she realized that the child couldn’t get by without it.

Lilit uses the unit to breath 2-3 times daily and takes a regimen of medicines and nutritional supplements.

Lilit is starting to lose weight – a bad sign.

A t first, the doctors wanted to operate but decided to hold off till Lilit got older and the illness progressed. They aren’t sure if Lilit will make it to her twentieth birthday.

Lilit and her family live in the Sipanik village in Ararat Marz. the family can’t make ends meet let alone pay for Lilit’s medical care.

Lilit’s mother Karineh told us that her other child Benik is ill as well due to the dampness in the trailer they call home. Doctors have diagnosed that the boy has kidney nephritis.

Hetq covered the story of Lilit last year but there was no response from the government. the only form of assistance came from the Diakonia charitable organization in the form of periodic food packages.

This year Lilit sat down and wrote a letter to Armenia’s first Lady Rita Sargsyan. but the letter was addressed to the Ararat Regional Authority. Edik Barseghyan, the Regional Governor, responded that his office had financially assisted the young girl.

The assistance Barseghyan mentions amounted to 20,000 AMD ($60) and was used to but Lilit a school uniform this September.

Lilit’s aunt wrote a second letter to first Lady Rita Sargsyan. she included a picture of the girl breathing with the assistance of the medical device.

A few days ago the family received a reply stating that the first Lady wouldn’t be able to help until February 2012.

Once, the family wrote to the Catholicos saying, “if you refuse to help this girl remember that every day the church bells chime Lilit has held out her hand to you for help.”

The family received no answer from the church.

The Red Cross office in Armenia told the family that it only assists those with HIV/AIDS.

Prosperous Armenia Party (PAP) MP Tigran Stepanyan is the legislative representative for the village of Sipanik. Narineh says she wrote to the PAP office in Masis but that her request for assistance was turned down. MP Stepanyan is aware of the girl’s medical condition but said he doesn’t deal with such matters.

Narineh also wrote to the Gagik Tsarukyan Foundation, but says they never answered.

Lilit’s mother says that received 25,000 AMD from the village municipality bad they spent it on school supplies.

Narineh has lost all hope. she says that there is no one coming forth to help Lilit.

“Lilit has lost her health but she at least be afforded the chance to have a happy childhood. We draw strength from God and will never give up seeking assistance. there is no one else to rely on. the elections are coming and at least the candidates will be doling out 5,000 Drams for votes,” Narineh laments.

The young girl can’t even watch her favorite cartoons. the TV is tiny and old. the family is forced to burn wood to keep the trailer they live in warm. They collect wood from the streets and even burn discarded clothes found in the trash.

Karineh says that when the fire goes out even water in the house freezes.

When it was time for us to leave, Lilit showed us a picture of a house she painted. the house has two doors,

She said that one of the doors was for her Aunt Narineh and her cousins.

Lilit told us that she cannot imagine living without them.