IMPORTANT UPDATE: The campaign has moved here.
Meet Oana Stoica, a 34 year old young woman from Zlatna, Romania. Her life is nothing but a long chain of pain and suffering. She suffers from a cruel disease, called dystrophic epidermolysis bullosa, which affects her skin. Due to this disease, Oana’s body is covered with flesh wounds that appear randomly and produce a lot of pain. After a while the wounds heal and other fresh ones appear.
Everything started when she was just a child. She had no childhood. The doctors diagnosed her when she was six and the disease has been haunting her ever since. She practically learned to live with the illness, in a continuous pain. She sometimes prays to God to end her suffering and to take her in Heavens where there’s no pain.
Painkillers ease her pain, but they are expensive and she has to take them all the time. She always has to be bandaged, because her wounds are opened and they might infect. Unfortunately this awful disease caused Oana to lose her fingers. Now she needs even more help. Dystrophic Epidermolysis Bullosa has no cure known to man.
However, there is hope!
She can get a specialized care which slows down the progression of her disease but it can be done in Germany (Romania does not offer this kind of service). Unfortunately, to get the care in the clinic from Germany, she’ll have to pay €250 / day, a large sum of money. She must benefit at least 2 months of this care. At least €10.000 is needed. Her handicap pension is barely enough for her to buy bandages and painkillers every month.
Oana needs our help…
How can we help Oana?
This humanitarian campaign is a little bit special and different from other humanitarian campaigns because we proposed to run and to… sell kilometers. We’ve created a team in different cities of Romania and we run. We keep in touch using our Facebook Volunteer Group and at the end of the day, Adrian, the coordinator of this campaign, sums all the kilometers, from each volunteer and add them to our campaign page. Everybody can join the team.
So, in order to help Oana you can either buy our kilometers for €1 / KM or you can join our running team. We could better use buyers because the KM are easy to raise compared to euros. Fortunately there are a lot of good willing volunteers.
We want to run and sell 5000 KM in 2014 and help Oana go in Germany to get her specialized care!
To help Oana we must sell as many KM as possible and as fast as possible, because her health condition is critical. Tens of skin wounds appear, as other heal and the pain is hard to bear, even if she is a strong woman. Consider your contribution a double investment. We promote a healthy life to many youth that join our team. We run together and we fight against obesity, diabetes and other health diseases caused by the sedentariness of our generation.
Together we can help Oana to start a new life.
To help Oana please fill the next form. After you click the submission button, you will receive the required information for completing the donation and the purchase of KM. Thank you very much! You are a true man!
Whom are you trying to fool? There is no treatment for Epidermolysis bullosa dystrophca (EBD), the disease which Oana is affected by although a lot of promising research is presently going on worldwide. See the website of Debra Internatinal ( http://www.debra-international.org ) for further information.
My daughter (17) is suffering from the same disease. You may have hand surgery that will release the strictures of the hand. Oana may need a PEG (gastro feeding tube) which would make her generally more healthy as obviously the disease is affecting her mouth, gums and most probably her oesophagus. If she would contact [email protected] Vlasta could be of great help for her to direct her to effective doctors who are informed about this rare disease.
Being affected by EBD means that Oanas health is very much affected by the disease, her body needs about 125 – 200 % of the normal caloric intake compared to a healthy person her age. It will be difficult to eat that amount of food suffering from EBD. Also she needs extensive and multi-disciplined medical care which she may get if she contacts Vlasta Zmazek.
EBD is a terrible disease, difficult to live with, it needs dedicated care givers. However, you cannot heal it with money no matter how much. So whoever is promising healing against money is a fraud and a crook.
If you need further information, please do not hesitate to contact me.
Sabine Daby
DEBRA Germany
I completely agree with Sabine! Is there any link with Debra Romania? http://www.minidebra.ro/
Hi Sabine! I'm sorry to hear about your daughter's condition. We know that this disease is incurable and I've stated clearly that the €10.000 are for stopping the progression of the disease in Germany. I'm not a doctor and I don't know which are the procedures in this type of genetic disease. I will provide you with more information about what will she get in the clinic in Germany. If you can provide more information about what medical care does your daughter receive, it will be great. Thank you for your feedback and for your interest. Adrian Stepan – blogger, volunteer and runner in "Run for Oana" campaign.
Romania
Asociatia Mini DEBRA Romania
Str. Dobroiesti Fundeni, Nr.12
Com. Dobroiesti, Jud. Ilfov
Contact Mihaela Neacsu (President)
Phone +40 0745 113729
Email
mihaela_neacsu07(at)yahoo.com
Website http://www.minidebra.ro
Hello Adrian,
I suggest that you get into contact with your responsible DEBRA Romania firstly.
ALL information about treatment and care of EB patients are available on this website:
http://www.debra-international.org/patients/caring-for-someone-with-eb.html
You may download free of chare a number of broschures on wound care, care of teeth, lots of general information about caring for a person with EB, more guidelines will follow soon.
There is also the "EB without borders" http://www.debra-international.org/debra/eb-without-borders.html
where you may ask about how to solve specific problems in your country.
Whatever kind of operation Oana might need – DEBRA International represents a worldwide net of national Debra organisations and before you start raising money for a non-specific reason you should get all kind of information first. Start with your own national Debra Romania organisation, then ask Vlasta for help. Find out HOW Oana might best be helped. You do not necessarily need fundraising for that just yet. There are many possibilities for EB patients thanks to DEBRA.
About my daughter – it is a daily struggle of course and a full time job but there is also quality of life. Thank you for asking. It takes dedicated caretakes with a lot of patience. A lot of patience is needed for getting into the internet, networking with others, building up competent national Debra's, doing political ground work for better health-insurance, etc. I know this is a very hard job in Romania but whatever surgery (there is no miracle cure and the disease cannot be stopped) might be needed, there is always a lot of post-operative care needed which cannot be given abroad.
But EB without borders is able to fund the training of medical professionals all over the world and Vlasta has organised EB conferences in your region of Europe already. She has a lot of experience.
If you have any more specific questions – please do not hesitate to ask.
Best wishes and all the best for Oana – Sabine Daby
Hello Sabine,
YES there is a link to Debra Romania! Oana is a member of Debra Romania!
WE ARE NOT TRYING TO FOOL ANYONE HERE!
I have talked to Mihaela from MINIDEBRA Romania!
I, personally, think that there is only a misunderstanding here!
We are trying to help Oana a little! We are not raising money for a non-specific reason and even if there is no specific treatment for this terrible disease she can be better taken care of in GERMANY and this is reason enough for me to try to raise money today for Oana and maybe another day for someone else who is in need! Money can’t cure her! But in this situation they can offer her something that she does not get here in Romania!
Best wishes and God bless us all!
Thank you Sabine! Unfortunately the possibilities for a EB patient in Romania are very limited. There is no legislation to protect the EB sick and their only chance is to go in other countries that provide specialized care, as you know. I don't say I'm the owner of the absolute truth. I have a lot to learn about EB and the romanian patients, DEBRA and so on.
I've contacted Mihaela and she said that there are 48 patients like Oana that need help and they are dying because DEBRA Romania can't handle the situation alone and the government doesn't help a bit. The corruption and the sickness of our society does victims and everybody is on their own.
You have a great luck to live in a country that has a complete medical system and really help the sick and the ones that are in need.