The 1-year-old oxygen device, parents, is damaged

It's a rare genetic disease in the world. After the many challenges of beginning her life, 1 year-old is already dependent 24 hours on oxygen therapy. L.D. from Pristina must be sent into control every month, while last June the respiratory device, worth 7 thousand euros, has also been damaged. Parents, Bee, and Deception are afraid that this device will one day break down and call for help so as soon as they can buy it.

The 1-year-old disease in Kosovo is considered incurable. For Kosova Prees, Mother Bleta Dili shows that as young parents, they are having a lot of difficulty in caring for her, while treatment also requires very big money.

I'm writing to you about our first daughter, 1 and 6 months old. Our daughter's case is a rare genetic case in the world. She's after the many challenges of beginning her life, now she's dependent on oxygen- therapy 24/7 with mobile respiratory devices. According to doctors in Kosovo, this disease is incurable, but outside Kosovo they say that oxygen therapy will probably go away. Our daughter needs to be checked every month by the doctor/pediatri. But the mobile respiratory device is damaged and we can't get it to check unfortunately. We as parents are not able to provide a new device to our daughter, which costs 7,000 euros. If anyone has such a device or does humanism to provide the camera, then it's been very helpful to our daughter to send her to the doctor”, she said.

In addition, she relates that in 2019 the girl had been sent to Turkey, which the State had then provided for 30,000 euros.

“350,000 we've secured from the state. 28,000 euros has cost the plane to go and back because it was an oxygen plane for the girl, and we paid for it ourselves. Another 35,000 have appealed for help since we were in Turkey. As our new parents, it's very difficult to provide income. Monthly expenses are too big that we're dealing with buying bandage drugs, syringes for our daughter”, she adds.

This case also figures in health institutions. The Office of the Health Insurance Fund has confirmed to Kosovo that in 2019, 30 thousand euros was earmarked for medical treatment abroad for the case.

“confirm that L.D. applied to the Health Insurance Fund, and dated 09.12.2019 under Administrative Guide (QRK) NR. 03,2017 for Medical Training Out of Public Health Institutions (TMJISHP) has divided amounts for its medical treatment in Turkey, worth 30,000.00 euros”, the Health Insurance Fund's response reported.

The bee itself is unemployed, but only her husband works. She should take 24 hours for her daughter, 1 and 2 years old. Meanwhile, monthly expenditures total up to 500 euros.

The Purification bee calls for help to all who have the opportunity to contribute to the purchase of the new respiratory device.

All those who want to help, the number of Bee Dili accounts is 19013294113208 -BKT. More than that, parents can contact.

Bee Dili- 045/242/05

Dili- 044/38/507 submission