Saturday 28 December 2013

A kind of Christmas present for Aurela


Aurela mit Teddy auf den Schultern
Aurela  with a teddy
on her shoulders
Not really. Or is it? This time little Aurela will receive Cytarabin, one of the drugs which is used for her monthly maintenance therapy which she will get on January 6th the next time. This gives the two year old suffering from leukaemia time to survive. Time that is used by some people far away from her village of Uglar in Kosovo to enable her to have a life saving stem cell transplantation. 
Schachtel ARA-Cell (Cytarabin)The girl who is usually very cheerful does not know what destructive force, the blood cancer, is working in her little body. She does not know yet why she goes to hospital every four weeks where the staff desperately tries to find a place on her picked all over arms to set an entrance for the infusions necessary for her therapy. 
She runs around and dances again when she has recovered after a few days. However - how long will this last? How long do we have to collect donations and organise a stem cell transplantation for her? The clock is ticking. But the organisation is running. In the background without Aurela knowing about it. A lot happens! 
Of course we still need donations (for more information and donations look here: WLV e.V Aurela )! We have not reached our goal yet. But for now more medication goes on its way to Kosovo which will happen after the Christmas holidays. For Aurela to gain time. Time to live. Hopefully soon for good.  .

Wednesday 18 December 2013

FAQ: About Aurela and the goals of the campaign

1.: Who is Aurela?

Aurela (born on 29. July 2011) is the first born daughter of Kosovare (*1992, born. Zeqiri) and Flamur (*1991) Haliti. She lives with her parents included in a typical Kosovo-Albanian extended family, whose head of family is grandfather Bajram (*1960) in Uglar (close to Gjilan, south of Prishtinë).
She is the darling of the family (besides the week after the chemotherapy) and a real sunshine. Towards strangers she is a little shy though. The family does everything to heal her. 

2.: Provision

Aurela mit ihren Eltern im Oktober 2012
Aurela with her parents in October 2012
The family lives from raising chicken, which was enough before Aurela fell ill. The resources have been used up though through the huge cost of treatment and it also caused an for the situation in Kosovo enormous amount of debts. 
The problem in Kosovo: There is no health insurance neither any other support. All doctors and dentist appointments and stays in hospitals have to be paid in cash. Some of the medication for Aurela can not be bought in Kosovo and is organised in Germany and send to Kosovo by Ulf Hundeiker a friend of the family.  
The therapy currently costs about 800 Euro per month which is four days in hospital plus 5 Euro per day of treatment to get the nurse actually do her job. Yes that's bribing. 

3.: The Illness

Die leukämiekranke Aurela im Krankenhaus
Aurela who suffers from 
leukaemia in hospital
When Aurela was 5 months old (in January 2012) she got more and more ill as well as more severely. In May the children's hospital in Prishtina diagnosed her with acute myelogeneous leukaemia which could not be treated there. They transported her to Tirana, the capital of Albania, where she arrived more dead than alive. She receives now maintenance therapy every four weeks, after an extremely exhausting first chemotherapy then, which she can tolerate much better. 
Since spring 2013 she again gets treatment in Prishtina after a very strange agreement between the government in Kosovo and Albania which means she can not be treated in Tirana anymore. However the situation there was quite horrible anyway. 
Ulf Hundeiker, a friend of one of Aurela's aunts who also lives in Kosovo, got angry about the unfairness and the obvious hopelessness of her situation, when he heard of Aurelas fate and took action. He was informed by Dr. Bardhyl Abrashi, the children's oncologist at the hospital in Prishtina, that her only chance of healing is a stem cell transplantaion. 

4.: The goal of the campaign

Blutprobe von Aurela für die Stammzellenspendersuche
blood sample of Aurela for the
search for a stem cell donator

Aurela is meant to have a stem cell transplantation. For this we need  80.000 Euro (Moscow, Saint Petersburgh) up to 250.000 Euro (hospitals Germany).
The whole campaign is in line with this goal. The donations are only used for this goal. Not even the maintenance chemotherapy which Aurela needs to survive until she can have an operation is paid by the donations. The maintenance chemotherapy is paid for by Ulf Hundeiker and sometimes friends help as well.

5.: Why especially Aurela?

Aurela in der Klinik in Prishtina
Aurela in hospital in Prishtina
Counter question: Why not? Are other children worth more? Or are they a reason not to help? 
Besides: In industrial nations which still have working health systems and health centres which can actually help, a child has a chance to be treated. A stem cell transplantation is not possible in Kosovo because there is no health insurance and everything has to be paid in cash which many do not have. Because a third of the population lives in poverty. There is no other support. 
We might not be able to save the whole world. But a little piece of it. And that is more than nothing.  

6.: How is Aurela treated currently?

6.1: Constant therapy at home:

6.2: Every four weeks while staying in hospital as transfusion

7.: More information

8.: And who is Ulf Hundeiker?

Ulf Hundeiker, born 1972, never wanted to get used to the cruelty of the world but had so far never started any campaign like this. It somehow happened to him as he says. 
WLV-Mitglied und Projektbetreuer Ulf Hundeiker
WLV-member and project manager Ulf Hundeiker
He used to work as a nurse where he had to do more with cancer than anything else before he had to stop working in 2011 due to health issues. The number of patients whom he offered terminal care are in 3 digit numbers. He has never seen death as an enemy. But in this case he considers this differently. He actually (May 2013) works in a dealers workshop for bike carriers.  
He met Mimoza, Aurela's aunt, via his wife. She speaks German as she spend about 5 years in Switzerland during the Kosovo war. He got his information about the situation in Kosovo as well as about Aurela from her. 
He loves music (metal, renaissance, medieaval, jazz, really everything), films ( he is filming a documentary about the Band PORTER (link in German) from Witten, Germany and their new album), photography and literature. He is not usually spontaneous but his life does not care for this currently. And he can be very insistent if he wants to achieve something.

Tuesday 10 December 2013

FAQ: Donations and what they are for

1.: What is the money used for?

The donations are for a stem cell transplantation for Aurela Haliti to save her life this way. The treatment cost which have to be paid in cash are up to 250 000 Euro depending on the country the operation will happen in. 
The journey to Kosovo and everything that was connected with it and the (very expensive) medication for her actual therapy is NOT paid with this money. Ulf Hundeiker does NOT have a holiday there and he can NOT touch this money. He pays and paid for the journey and the medication out of his own pockets. Not that he can really afford this. Sometimes though friends help. 
Blutprobe von Aurela für die Stammzellenspendersuche
blood sample for the search for
stem cell donor for Aurela
Even the search for the "genetic twin" the possible donor of stem cells is not paid from this money. The HLA-tissue typing for Aurela is taken care of by the Stefan-Morsch-Stiftung.

2.: Doesn't the health insurance pay for all this?

There is no health insurance in Kosovo. Everything has to be paid in cash. A few insights into the situation of Kosovo: 

3.:What happens if the money can not be used for Aurela or there is more money?

The money will go with 2/3 to the Stefan-Morsch-Stiftung and 1/3 to the DKMS if there will be more donations or, but we hope this won't happen, Aurela has no chance of survival. 

4.: Is all this respectable?

Filmklappe für das Aurela-Video
clapper board for Aurela video
To doubt the respectability is very in vogue. WorldLifeVision e.V. (link is in German) is a non-profit organisation and the donations are tax deductible (in Germany I am not sure how this works elsewhere) and how the money is used has to be accounted for. This means it is so to say officially respectable.  
Donations ONLY go to this account
World Life Vision e. V. (Gemeinnützig)
Note to payee/ project number : WLV2012-1002
Account: 4740084
Bank code: 83065410
Deutsche Skatbank

For payments from other countries than Germany please use

BIC GENODEF1ALT
IBAN DE68 83065410 0004740084

or to the Paypal-buttons on OUR pages.
If anyone gives you any account other than these it is very likely that he or she wants the money for themselves and it won't help Aurela. Which means: FRAUD! 
If you are still in doubt please contact the Stefan-Morsch-Stiftung and ask Mrs Morsch about Ulf Hundeiker. 

5.: Could you not save more children with less serious illnesses with this money?

Reisepass mit Stempeln des Kosovo
passport with stamps from Kosovo
A lot is possible. But if you ask those, who ask this question, what they are actually doing for all those many children they usually have nothing to say. 
Question: Can you measure a life on the amount of money it needs to be saved? The more expensive the less right to be treated? This kind of measurement is not only wrong but also deeply unethical. Of course you are free to give money to someone or something else if you think like that. But we think this question is just plainly wrong.

Wednesday 4 December 2013

Aurela inbetween chemotherapies

Aurela, who is now two and a half years old, is actually quite a normal child inbetween chemotherapies which she gets every four weeks. She talks constantly and her vocabulary grows daily.
Aurela auf der Schaukel
Aurela on a swing
She laughs a lot and dances happily to music when she has recovered from those four exhausting days in the children's hospital in the capital Prishtina. She switches on the tv herself if necessary and even finds the music channel! 
She also loves to talk on the phone preferably with Mimoza, Ulf's German speaking contact person in Kosovo. Really a quite normal, cheerful child -

if there would not be the leukaemia for which she gets treated since two years which is actually nearly all her short life. Right now it is ok with her after she just about cheated death two years ago.  
But the only real chance to heal the leukaemia fully is a stem cell transplantation. This can not be done in Kosovo especially as it is extraordinarily expensive: In Germany for example such an operation would cost up to 250.000 Euro!
Even the running treatment is not easy to ensure. Some medication is not available in Kosovo. These are bought by Ulf Hundeiker the project "manager" in Germany and he organises their transport to Kosovo as well. But the rest needs paying too and that has to be in cash as there is no health insurance in this still destroyed country. 
The Haliti's, her family, is highly in debt because of that but there is nothing too hard to bear for them for little Aurela. But to raise a quarter of a million is absolutely not possible. That is why we fundraise. For that Aurela can laugh happily when she will be grown up.

IF.

Project information
Donations
Film about Aurela (Please enable subtitles for English translation)