Help Adrian to receive his life saving treatment
My little handsome boy “Adrian”, who can be a miracle of a 21th, century. He was born in july 2017. At the first moment of his birth, he tightly got my finger with his tiny soft hand so maybe he wanted to tell me never give me up.
At his first birthday we got the result of genetic test which showed that our boy “Adrian” has a rare genetic disease, Spinal Muscle Atrophy (SMA).
The good news is that there is a cure, however it is one the most expensive one in the world.We found that there is a treatment which is approved by FDA, Spinraza, which costs 750,000 USD in the first year. From the second year, this drug should be injected three times in a year which costs 350,000 USD each year and it should be injected during life.
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EUR > if you are in Europe or inside the SEPA zone
Account name: EliMo Alapítvány , EliMo Foundation
BIC: TRWIBEB1XXX
IBAN: BE09 9672 0356 3657
Bank address: Avenue Louise 54, Room S52 Brussels 1050 Belgium
EUR > if you are outside of Europe or the SEPA zone
Account name: EliMo Alapítvány , EliMo Foundation
SWIFT/BIC: TRWIBEB1XXX
IBAN: BE09 9672 0356 3657
Bank address: Avenue Louise 54, Room S52 Brussels 1050 Belgium
AUD > in Australia
Account name: EliMo Alapítvány , EliMo Foundation
BSB code : 802-985
Account number: 211360926
Bank address: Transferwise 36-38 Gipps Street Collingwood 3066 Australia
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Adrian’s Story
He was growing up with his cute smiles. He was so smart and aware of everything going around him. Everything was going good till he became 6 months old. At that time, he had not the ability of crawling yet, so we became worried and decided to take him to doctor. The doctor prescribed Blood test, MRI, and some other tests. As well, the doctors prescribed so many drugs that can improve his body movements and we started his rehabilitation program about 2 months later. A little improvement happened, so he could sit independently about 10 minutes. But the improvements was not the same as a normal child. Eventually, at his first birthday we got the result of genetic test which showed that our boy “Adrian” has a rare genetic disease, Spinal Muscle Atrophy (SMA). This rare genetic disease can happen in 25% of the children, when both parents are carriers of the affected gene. But we were not aware about this damaged gene, because we did not have any genetic disease in our family and also we have done all the tests during the pregnancy.
We became very shocked but not disappointed. We started searching about the disease and the ways to cure it and also consulted with different experts in and out of our country.
Finally, we found that there is a treatment which is approved by FDA, Spinraza, which costs 750,000 USD in the first year. From the second year, this drug should be injected three times in a year which costs 350,000 USD each year and it should be injected during life.
Another treatment which was approved later is Zolgensma which cures a patient with only one shot injection, but unfortunately this drug also has a high cost. It costs over 2 million Euros and there are only a few hospitals in the world that can perform the injection procedure.
Recently, another treatment has been approved for this disease, Risdiplam (Evrysdi). This drug is administered by mouth and is approved for patients with any age. Since these three treatments are very expensive and no family can afford this price, the insurance system of different countries support these drugs, but unfortunately our country, Iran, does not support.
We believe there are far beyond two million people who could and would donate 1 to 2 Euros, if they knew about this story. Please be Adrian’s voice, spread the word, talk to your family and friends and invite them to join us in this case. Let’s show to ourselves and to our children that humanity is powerful, that kindness is in our nature and that the power of masses is endless.