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"We fear for the child's life"/ This is the disease that cannot be cured in Albania, say the parents of the little boy

2022-11-09 21:51:16Aktualitet SHKRUAR NGA REDAKSIA VOX
"We fear for the child's life"/ This is the disease that cannot
Ajsela and Klodi Kushova are Flori's parents

Cystic fibrosis is an incurable disease in Albania. In the show "Live with the Clock" Ajsela and Klodi Kushova were the parents of Flori, a 5-year-old boy who suffers from this disease.

They have shared their family experience with the family occasion.

"It is my son Flori who turns 5 in February. We found out three months after his birth that he suffers from this disease. We went to the emergency room. The first moment the doctor saw it, he suspected it was cystic fibrosis,"  says Ajsela.

For them, in the first moment, information was also missing. "When the boy was diagnosed we didn't have a lot of information. We were terrified at first because we didn't have a lot of information." , said Claude.

Ajsela Kushova stated that: "The information on the Internet is very wrong. At first we searched on the Internet, the panic was great, we said that we have had our son for a year and so, but reading the right pages today we understand that a big step has been taken, it is close to a cure for this disease. We got the medicine, the supplements through Italy, it's very hard to find, we only managed to find it through our private channels."

They show that they have difficulties in their daily life.

"Our day is difficult. 1 hour or 2 hours is the boy's treatment which can have 1 or 2 processes or can be added. We arrange our affairs to be there to carry out the procedures for Flori. Flor must always take vitamins, iron supplements and eat a lot, but he is always smaller than his peers," said Ajsela.

The lack of treatment for this disease in Albania makes them look towards emigration and why they do not want such a thing.

"We don't want to leave Albania, but we love our son, we love our family. Since 2018, I have sent papers and they told me that fibrosis is cured and they gave me the name of an antibiotic. I received answers from a specialist that are not correct. When I was informed that there is medicine in Montenegro and Bosnia, I wrote to the institutions that an agreement can be made with these countries. I got a negative response.”

They ask that all the parents of children suffering from such a disease gather together and make a petition together so that their voices are heard.

"First, I want all the parents to gather together to understand where we are. Our goal is for the medicine to arrive at the right time. We want to live here, that's our wish, but we want to live healthy so that our son has a chance to live. Our goal is to come together and write a letter together so that our voices are heard."


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