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🔥STOP SMA! Let's save Olek's life❗️

Aleksander Lewandowski
Campaign finished
8 444 602,00 zł ( 100.52% )
Donated by 208211 people
Campaign goal:

Gene therapy in the fight against SMA and rehabilitation

Campaign organiser: Fundacja Siepomaga
Aleksander Lewandowski, 2 years
Czarna Woda, pomorskie
SMA - spinal muscular atrophy type 2
Starts at: 19 June 2020
Ends at: 15 March 2021

Campaign description

You hear SMA - spinal muscular atrophy and you see a child who is getting weaker every day. Dying neurons make it lose strength, it cannot develop and function normally. Finally, the moment comes that the child cannot swallow food on his own, and every breath turns out to be a superhuman effort. Your heart breaks in pain because the baby is only a few months old and is sent by bad fate to a deadly fight for his own life. This child's name is Olek and he is our son, and the greatest chance is given by gene therapy for over PLN 9 million ... Help!

Aleksander Lewandowski

Oleczek was born in the 37th week of pregnancy, this is our second child. He received 10 points on the Apgar scale. During the first months of his life he was developing properly, there was no indication that something would be wrong. We were happy parents, who were looking at every progress of our long-awaited happiness for which we have been  waiting for 3 years. However, when our beloved son turned 8 months old, the first signals appeared -  something was going wrong.

Oleczek stopped lifting his head while lying on his stomach, he never sat down alone, and when seated he swayed and fell. He also began to lose his ability to sit, and his body became more and more flaccid, his legs refused to obey, they did not want to cooperate with the rest of the body, he never stood up or walked on them. These symptoms caused the yellow warning light to come on.

Aleksander LewandowskiAfter consultations, which we hurried to check what was going on, we heard that everything was all right, that we were exaggerating, that Oleczek was lazy, that he still had time and that every child was growing at a different time. However, it did not calm us down and at some point we asked directly about genetic tests for SMA. Unfortunately, we heard a negative answer ...

We started private rehabilitation of Oleczek on our own, blindly searching for the reason for this state of affairs, and we found out  from physiotherapists that the child may have some terrible neuromuscular disease and it is not known whether its development will be going properly. Finally, Covid19 appeared in the world, which also paralyzed our fight for our son's health. It wasn't until he began to weaken that we agreed to see the neurologist again and received a referral. After 3 weeks we got the result, and basically the verdict ... SMA type 2.

Aleksander Lewandowski

To say that the diagnosis has knocked us down is nothing to say. The next few days were cut out of our biography, we had to cool off after this huge blow. Then we started to work and fight for the son's future. At that time, we also found out about cosmically expensive genetic therapy that virtually all children with spinal muscular atrophy in Poland collect. Seeing photos of babies who have already accepted this therapy, we have made the only possible decision. We must try it.

Innovative gene therapy appeared only a year ago in the USA and works differently than the drug available in Poland, directly affecting the damaged SMN1 gene and helping to provide the right amount of protein. Therapy also has another important advantage, because it consists of a single administration, which is enough for a lifetime, and you don't have to give it to your child every few weeks as a painful injection. It is said to be the most expensive drug in the world because it costs over $ 2 million. Fortunately, for several weeks you can also give it in Lublin, without having to go to the USA.

Aleksander Lewandowski

We must be in a hurry, because this therapy can be used only on children under 2 years of age or until the toddler does not exceed 21 kg. Oleczek will soon be 1.5 years old, and he is still not able to get up from the floor, crawl or  walk. The muscles fade and other skills disappear, the child is very flabby and overflows through our hands. As a result of muscle atrophy, the chest deforms into a bell shape and collapses. It may become respiratory failure at any moment, it is an inclined plane, we are heading towards respiratory support with a respirator. We need to stop it and for that we need your help.

The amount that appears on the fundraiser is huge and we are aware of how much work is ahead of us and how many good people we have to ask for support, because we can't do it humanly. Be with us. Be a great Army of Oleczek, with whom we will win this unequal fight for health ...



🇩🇪 version

SMA, das ist ein Killer. Bitte helft uns, Aleksander zu retten.

Du hörst SMA - spinale Muskelatrophie und du siehst ein Kind, das mit jedem Tag immer schwächer wird. Es kann sich nicht normal entwickeln und funktionieren. Dann kommt der Moment an dem das Kind nicht mehr selbständig schlucken kann und jeder Atemzug zeigt sich als übermenschliche Anstrengung. Infolge dessen muss in der naher Zukunft eine künstliche Beatmung und Ernährung durchgeführt werden. Das ist die Krankheit von Alexander.
Dein Herz wird zerbrechen wenn du es siehst, weil dein Baby erst mehrere Monate alt ist.
Durch ein schlechtes Schicksal ist es gezwungen, einen mörderischen Kampf um sein Leben zu führen. Dieses Kind ist unser Sohn und die größte Chance gibt es durch eine Gentherapie . Diese Therapie kostet leider knapp 2 Millionen Euro ! 

Aleksander ist unser zweiter Sohn, der in der 37 Schwangerschaftswoche geboren wurde.Seine ärztliche  Untersuchung nach der Geburt wurde mit vollen Apgar Punkten bewertet. Die erste Monate seines Lebens hat sich Aleksander normal entwickelt und wir waren überglücklich, einen gesunden Sohn zu haben. Mit 8 Monaten jedoch ergaben sich erste Probleme. Aleksander konnte auf einmal seinen Kopf nicht mehr alleine heben obwohl er das vorher konnte. Er konnte nie lernen, alleine zu sitzen. Sein Körper wurde immer schwächer und schlaffer aufgrund der Krankheit. Deswegen hatten wir große Sorge um ihn und suchten ärztlichen Beistand. Das ergab sich als schwierig , keiner konnte uns am Anfang helfen, wir waren ratlos. Deswegen haben wir uns entschieden die Rehabilitation einzuleiten und tragen die ersten Kosten davon. Die Therapeuten gaben uns zu verstehen, dass er eventuell eine neuromuskuläre Erkrankung hat. Durch Covid 19 jedoch verzögerte sich seine Behandlung. Nach langem Warten bekamen wir einen Termin bei einem Neurologen. Dieser hat uns in eine spezielle überwiesen wo die Untersuchungen durchgeführt wurden. Nach über einer Woche wurde uns das Ergebnis mitgeteilt. Im Grunde handelt es sich um ein Todesurteil von Aleksander …. SMA Typ 2 !!! Die Diagnose hat unsere Welt erschüttert . Wir haben nicht aufgegeben und kämpfen jeden Tag um unseren geliebten Sohn, um sei Leben. Durch eine Gentherapie besteht die Möglichkeit, die Krankheit aufzuhalten. Jedoch ist diese Therapie extrem teuer, rund 2 Millionen Euro und alleine für unsere Familie nicht zu bezahlen. Mit dieser Therapie könnte Alexander ein normales Leben zu führen. Sie ist zum 2 Lebensjahr zu verabreichen. Aus diesem Grund ist Eile geboten, da uns nur noch sehr wenig Zeit zu Verfügung steht. Aleksander ist jetzt schon 1,5 Jahre alt.

Uns ist bewusst, dass es sich um einen sehr hohen Geldbetrag handelt. Es gibt noch sehr viel zu tun für uns als Eltern. Wir hoffen dabei auf die Unterstützung von möglichst vielen guten Menschen, um dieses tragische Schicksal von einem unschuldigen lieben Kind abzuwenden. 

Bitte unterstützt uns bei dieser Aufgabe. Teilt bitte auch diese Botschaft weiter.

Herzlichen Dankeschön

Alexander und seine Eltern

8 444 602,00 zł ( 100.52% )
Donated by 208211 people
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