“Radio Pershe” about the project “O2 kids” and electric scooters for kids with Pulmonary Hypertension

Favourite music, latest news,  cheerful mood, this is “Ranok na Pershomu”.

Ranok na Pershomu”, dear friends! 8.12 a.m. and we are not alone together with Anatolii and we are talking today about a very important issue rather not about the issue but about victories, because we are used to taking things positive. Andrii Gulei is here in our studio, a representative of the organization “Orphannyi Dzvin”.

“-Hello! Good morning!”

“-Good morning!”

“Retell, take the microphone closer to you”, “Don`t worry!”

“Everything is ok, you are not for the first time here, you see us for the second time here. Retell, I know, we have a very common question: How did you wake up? You told out-of-shot that it was very hard, as far as I understand, it`s unusual for you to get up at seven at it was about to happen today.”

“The weather in the street is not favorable for this”,

“-… dark enough, as I understand, but it`s ok”

 “-Yes”.

“-You woke up”

 “-it`s fine,the day will be hectic”

“- and a very long. We know this for sure.”

“-This is the most important. Let`s retell about “The O2 Kids Campaign” that took place not long ago. We want to hear several words from you about what kind of campaign this is and the importance of it ”.

“- Actually, I work in the Association of Pulmonary Hypertension. We deal with this issue, this is the disease that effects children and adults. Our organization is a member of The European Pulmonary Hypertension Association and namely they have established such project O2kids. The purpose of it is to raise the awareness of Pulmonary Hypertension that children have and in order people know that there is such a disease and especially this year this project has enlarged. The main focus was to collect money for electric scooters and portable oxygen concentrators . Why oxygen concentrators, it goes without saying because this disease causes breathlessness and electric scooters despite being a kind of entertainment they are more like a need for such children. This disease is accompanied by such a complicated condition that evokes fatigue, breathlessness, the child can`t jump, run and be active in his or her surrounding and it can in this way be depressing”

“-So, this is rather a need as far as I understand”

“-Yes, this is rather a need, to be..

“ to be in shape, and in pace..”

“…in order not to consider yourself different, or to have a feeling that this disease has a negative impact”

“…has a negative impact”

“…right, and we have taken over this project here in Ukraine and a chuld Chrystynka Makarchuk represented this project being the face of it. She has been having this disease since she was 5 months. The disease is also called Idiopathic Pulmonary Hypertension which origin is unexplainable.”

“ This is always so when you don`t know how it came and how to fight it feels like `ants are running`. Retell what what was the kids` reaction when they got electric scooters; what they said, how they felt when they were learning to ride them.”

“ We wanted to provoke some joy, create some fairy tale; the children wrote letters to the Saint Nickolas and we believed in miracle. The European Association of Pulmonary Hypertension learned that there is a letter to the St. Nickolas and they decided to present this electric scooter to Chrystynka and also a boy Artemko wrote that he has got the same dream and due to the benefactor who took the letter and the help of the church which handed over the letter and the person took and we managed to get this electric scooter for Artemko; the Pershyi Zahidnyi TV Channel joined actively to the celebration of St. Nickolas Day. And the third boy who got such present. It`s impossible to convey the children`s emotions being delighted. In fact, the children suspected that there would be a present as we invited them to Lviv but when they saw which the present was …”

“… they couldn`t believe their eyes”

“…Yes, and this is in the time of pandemia and tense situation, these emotions are more precious”

“certainly, there is less joy in pandemia.”

“And this emotions are still fresh. It was last week.”

“We remember, by the way, you were here and we saw each other and we saw the children`s eyes, they were so as if they saw something magical.”

“A real miracle.”

“It is so cool that children react in this way. They understand that this is not just the saint Nickolas and just the present this is really a chance to move and to do your life easier, new possibilities open and in fact, it`s amazing that such needs are satisfied and we are glad that you join this initiative and the the Pershyi Zahidnyi TV Channel, the benefactors that unite together and make children`s dreams true. It`s really incredibly cool.”

“ This is indeed, one small local victory. Let`s talk about the organization “Orpannyi Dzvin”. We spoke about it last year. How are you doing? Has anything changed? Has anything become better?”

“We hope that in the upcoming 2021 there will be positive changes as we see that the state budget has been adopted which took into account the patients` opinion that we shouldn`t count each pill, to ask and beg the costs by stepping the thresholds with pain. So the appropriate sum has been allocated and we hope there the treatment will be and this will make the patients` condition better as this is such a disease that doesn`t let us forget about it. However, our organization the Association of Pulmonary Hypertension, “Orphannyi Dzvin” we are trying  that this disease stay aside and make their life better and help them feel support. We are satisfied that in the time of ours, like we are today, in the time of pandemia, we manage to unite, to provoke positive emotions in children and adults.”

“ This is the most important”

“And to know that next year positive changes are awaiting as a perspective”

“We are also awaiting this”

“We believe in this for 100%”

“We believe that we will manage but not as it usually happens: at first costs are adopted then allocated for something different. The times of pandemia not an easy year how you overcame it and your preventive measures…”

“It was hard rather psychologically especially for patients with rare diseases and this is a greater danger that`s why we share our experience with those who have been ill. This person retells about the flow of the illness that this is not….”

“something horrible…”

“…reject panic attacks especially the matter is about patients with pulmonary hypertension in this case there is a big fear”

“rather a bigger panic comes”

“yes, a bigger panic but we have such groups in facebook for communication where there is a patient environment and they trust each other and talk and this calms down; besides we are trying to be in contact, however we understand that it`s hard to have face to face meetings for conversations and pandemia taught us the ways of communication”

“…online”

“Yes, we are trying always to be in contact and we speak about it and remind of it. There is  some news on our facebook page that we publish for patient surrounding and for people who are on our page for the first time and learn that there are rare diseases that there is Pulmonary Hypertension…”

“and together they felt better”

“even just saying a simple kind word of support”

“ yes, to support, you see, we used to be a problem and still is that a lot of people don`t know what orphan diseases are even me when monitoring among my acquaintances, in fact, only few know about it and it`s important to speak about it. This is a very noble mission to speak about this problem. Finally, for the end of the old year that finishes, finally it ends, everyone speak about it; I know everyone has dreams and what is your dream, the biggest dream you would like to come true next year?”

“I wouldn`t call that a dream, probably just gather, well, in a great number of people, friends and aquaintances and have a conversation, just share your emotions and not to worry about your health and about the heath of those who are nearby and this will probably be the biggest joy of such opportunity as we are all so exhausted”

“right, morally”

“exhausted by those worries first about our dearest”

“It seems to me that a majority share your dream, in fact, at least me, for sure.”

“Everyone wish the same”

“ We all lack live communication, so let`s wish something for the New Year and for Christmas it`s such a festive period, so couple of words from you”

“From myself…”

“certainly”

“…from our organization the Asssociation of Pulmonary Hypertension from the movement “Orphannyi Dzvin”, I wish to believe in dreams, to believe in miracle as in fact, thanks to simple deeds, unity, you can evoke positive emotions, joy and help someone who thinks…”

“  that for the help there is from nowhere to wait”

“that everything is complicated and frankly speaking, having my own example, I see that it`s possible and it warms you and adds you up that`s why I wish positive emotions not to concentrate on problems and I wish this pandemia finished”

“the majority wishes pandemia finished and we wish everything was fine with you and promise to support you as the TV Channel “Pershyi Zahidnyi” used to support you constantly at least providing media support, especially if you want to see children`s eyes which we have been talking about today with Anriy and Tetiana watch this program on TV Channel Pershyi Zahidnyi on our facebook page. You will understand what kind of magic emotions we have been talking about here in studio today.”

“I really want to repeat Andriy`s words that miracles happen but we perform them ourselves when we unite this is visible by demonstrating all the campaigns that we organize together with “Orphannyi Dzvin” and everything you do. So let`s become a little kinder to each other and notice each other`s problem and if possible help.”

“We should say good bye today, we will come back, dear friends, tomorrow from 7 till 8.30 on air on the TV Channel “Pershyi Zahidnyi” but we stay till 11 a.m. on 88.2 FM. This is Radio Pershe and on Radio Pershe. com., certainly online.”

“Right,we still have 2,5 morning hours, so join us, if you didn`t have time to wake up you will do it meanwhile and we will see each other if you join us at 7 a.m. on on the TV Channel “Pershyi Zahidnyi.”

“So hugs and kisses and bye-bye!”

“ Take care of yourselves”

 

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