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In 2015, Victoria Butenko’s program to support patients with cystic fibrosis made a breakthrough. Now we support children from 4 oblasts: Zaporozhye, Dnepropetrovsk, Luhansk and Donetsk and adults from all over Ukraine.
In 2014 we could only help children from Zaporozhye oblast and adults from all over Ukraine.
If we compare, we will see that in 2014 the program supported 16 patients with cystic fibrosis, and in the end of 2015 it already reached 59 patients.
Talking about the financial trust, in 2015 we received donations in the amount of UAH 690,000 for the patients with cystic fibrosis, while in 2014 - UAH 102,000. In 2015 we provided support in the amount of UAH 705,000, while in 2014 – UAH 170,000.
Besides, in 2015 we significantly expanded the scope of our support and currently we purchase: drugs, special nutrition, equipment and pay for diagnostics and psychologists’ counseling sessions, which are of big importance.
We will remember the year 2015 due to our intensive efforts to fight against the bureaucratic apparatus. Our children now have uninterrupted supply of the vital medication “Kreon”, and the question of governmental procurement of “Pulmozyme” is being considered. Those achievements became possible thanks to the united efforts of parents and staff members of the foundation. This year, parents and program manager attended 3 advocacy & communication workshops.
The activities to draw the attention of public and local authorities to children with rare genetic disease included a press conference, a photo exhibition, a round table and a campaign in Melitopol. A big pile of letters was written to policy makers, which also brought certain results. Our patients made a series of videos and there were also many interviews at the national and local TV channels.
A special achievement which was voiced by our Department of Health was that since the launch of the program the life span of patients with cystic fibrosis in Zaporozhye oblast grew up by 1.5 years. It is hard to imagine how many patients would not be with us if they did not have your support. But our program works – thanks to you – and the children have a chance to enjoy their lives!
The year 2015 will stay in our memory not only due to its victories, but also due to a grievous loss. The earthly life of Victoria Butenko came to its end. This girl was a model for many of our children and adults. She was the one who volunteered to speak at the round table, even though at that moment she was very weak and could not breathe on her own. We renamed our cystic fibrosis program after her.
In the year 2016 we have new goals:
- Procurement of medical equipment for outpatient care (pulseoxymeter, flutters, oxygen concentrators)
- Hiring and payment for the work of a physiotherapist in Zaporozhye Oblast Clinical Children’s Hospital, in the Center of Cystic Fibrosis
- Expanding the geography of the program
- Health improvement for patients (resort/camp/seaside)
We would like to thank each of our donors, each patient and parent – for their trust. Together we are strong and we cope well with doing wonders, extending time for joyful and fulfilling life!