Orphans and sick children of Zaporozhye, Ukraine
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The program of helping the children diagnosed with cystic fibrosis in case histories

This program is based on real stories of the children. All the events are real and taken from the lives of the children we support. In the future we will publish the official recommended program on our website, to be implemented by the government officials

Author: Olga Vovk, translated by Izabella Balakirsky, www.deti.zp.ua Published: 2015-04-28 15-55-00 Viewed, times: 1695
  
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Dear friends,

This program is based on case histories of the children. All the events are real and taken from the lives of the children whom our program helps. In the future, we will publish the official recommended program on our website, to be implemented by the government officials. Unfortunately, they don't consider the individual cases overly important - they only want to know the numbers.

And so, do forgive me, I will start with mourning. Mourning for our dear Arina, may she rest in peace. She didn't quite make it to her 18th birthday. The reason is that Arina didn't take the vitally necessary medication Pulmozyme. No doubt you're asking why and how come. This medication costs 12,500 hryvnyas (510 US dollars) per month. Right at that time, Arina was ill and all our efforts and fundraising were dedicated towards supplying her with equally expensive antibiotics she needed. We simply didn't know that not taking Pulmozyme would have such a result. Incidentally, Pulmozyme is recommended for government funding for children with cystic fibrosis.

Now, about those whom we can still save.

Little Viktoria and her dad. She is a very ill child. Her poor dad is over his head in debt. His sole aim and the only meaning of his life is to save his daughter's life. As of today, her father is deep in debt, and he tries not to think about what will happen later. There is only today and this moment, in real time. By the way, to buy medicines for Vikki, we already spent 85,000 hryvnyas (3,470 US dollars) in 2015. And that's in addition to the large sums her father also paid for her medications.

Mother Katya and her little daughter Pelageya. This girl is still very little and is just beginning her life's journey. But she already needs large sums of money for daily nebulizers and pills, because medical treatments for children who have cystic fibrosis starts from birth and continues until their last breath. Pelageya's mother was refused the prescribed medications, which are listed as essential, and without which her child won't survive more than a few months. As a result, Katya found herself at an impasse...It is true what they say, "A mother who is angry on her child's behalf is frightening". As a result, Pelageya's mother went to the City Council building, carrying a container of gasoline and a box of matches. Her demands were "to receive the medications essential for the child's survival, money for which is allocated in the healthcare budget, which, on paper, are 'purchased' for such children but are not actually distributed to them".

We also have an adult whom we help, Olya. She is over 18 years of age; more precisely, she's already turned 20! Unfortunately, there are not many adults with this diagnosis in the Zaporozhzhye region, and even in the entire Ukraine. That, for some reason, is taken to mean that there aren't any such. They exist, in fact. But there are no cystic fibrosis Centers for adults, nor is any money budgeted for their medications. Officially, Olya has no right to come to our center, which is attached to the regional children's hospital. But in adult hospitals, they don't know what this diagnosis means or how to treat it. For a moment, I'd like to emphasize the fact that the older the person with cystic fibrosis, the more attention they need to pay to their health. The greater the person's age, the more their body becomes resistant to antibiotics, which they must take during their entire life. That's how it is, and therefore, it would seem that such patients would receive even closer attention. But alas, all that doesn't happen in our country. I will tell you in confidence about how Olya goes to the hospital. First, she goes to be seen in our center, there, based on her labwork and tests, they give her instructions, or rather not official instructions but recommendations about which medicines she needs to receive this time. And then, with those recommendations from our specialists in hand she goes to get admitted to the city hospital, to receive the recommended treatment.

Each of the children we help has their own difficult path to travel. Every one of their families has to go against the system, against the current. It is unclear why, but these children and their parents have to fight for the things which, according to the paperwork, they are entitled to, and for the medications which are supposedly "purchased" for them.

We, the foundation's staff members, along with the parents, understand that we can't buy everything ourselves. And we shouldn't have to purchase the items which the state healthcare budget is supposed to provide free of charge.

We know the problem firsthand and we intend to insist on getting the help due to us from the state and regional budget. The above stories are direct illustrations of the actual situation, as of today.

Your financial help for our children with cystic fibrosis is always appreciated.

We would equally appreciate your help in spreading the word about this genetic disorder.

We equally urgently need legal help and counsel. We very much need a consultation regarding "points of leverage" for achieving the result we want. Any experience or knowledge you might have in that regard and would be willing to share is very important to us.








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