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Let's help Ania!

Ania Orłowska
Fundraiser finished
Fundraiser goal:

Gene therapy

Fundraiser organizer: Fundacja Siepomaga
Ania Orłowska, 2 years old
Zielona Góra, lubuskie
Starts on: 29 September 2020
Ends on: 30 June 2021

Fundraiser result

1 października 2021 roku Ania otrzymała najdroższy lek świata! Dziękujemy!

"Kochani, dziś jest ten dzień, stało się, Ania otrzymała terapię genową! Tak długo na to czekaliśmy....

Jesteśmy Wam wdzięczni, za to, co zrobiliście dla Ani i bardzo Wam wszystkim dziękujemy!"


Ania Orłowska

Fundraiser description

September the 9th - this day began like many other days. Nothing foreshadowed the tragedy, which we found out about few hours later... The doctor informed us of the results of the genetic tests of our daughter. Diagnosis - SMA1 - spinal muscle atrophy type 1. This disease takes away her strength and the chance to live a normal and healthy life... We don't have much time! The sooner Anna undergoes gene therapy, the better. This monster destroys our daughter’s body irreversibly day by day…

We must do everything we can to give her a chance for life. We need your help – this is the only way we can make this happen.

Anna is our second daughter. Her sister Ola is healthy. There were no signs that we would face such a horrible illness of the second child. An illness that could easily take her life away…

Ania Orłowska

SMA takes Anna’s strength away every day. Ola - her little guardian - does not understand why Anna does not extend her hands towards her (hold her hands out) anymore…

Anna was given 10 points on the Apgar scale after birth. For the first two months she developed like any other healthy newborn and the disease showed no symptoms at all. After this time, we noticed that she was more flaccid than other babies at her age and we wondered why she almost never cried. Everyone around would calm our fears saying that we should rejoice having such a calm child. Nevertheless, we took Anna to a physiotherapist who suggested that we should visit a pediatrician.

We didn’t wait long. We made an appointment straight away and visited the doctor the next day. After the examination the pediatrician made a preliminary diagnosis - SMA, spinal muscular atrophy. He urgently referred to the pediatric neurology department of a hospital where the diagnostics towards metabolic diseases (among others) started. Subsequent results ruled out other diseases and led doctors to decide to send our daughter to a hospital in Szczecin where Anna’s blood was taken to test for SMA - spinal muscular atrophy. For us, as parents, waiting for the results was an extremely hard time. At that point we began to search the Internet for information about this disease. With each page we read we felt more and more terrified by the thought of what will happen to our child when the result comes back positive…

Ania Orłowska

We waited two weeks. The longest two weeks in our lives... Despite our great fear, we still hoped that the result would be negative - that it was only the doctors' misconceptions. Unfortunately, on September the 9th, we found out that Anna has SMA1 - the worst type of this deadly and insidious disease, which causes the death of neurons responsible for the work of the muscles, thanks to which you breathe, swallow food, speak and move.

Imagine that you want to breathe, but your lungs are unable to draw air. Imagine that you are hungry, but you cannot swallow a bite, that something itches you, but you cannot move your hand, that you want to see what is happening next to you, but you cannot turn your head…

Day after day the disease takes away Anna's strength and we feel powerless. The only thing that remains - apart from everyday efforts to make her feel our boundless love - is the fight for gene therapy which, now, is our only chance to stop the disease of our daughter. Other available treatments only slow its progress.

Ania Orłowska

Until now the treatment was only available in the USA. As of this year, gene therapy is also available in Poland! It involves the administration of a copy of the defective gene, which our Anna unfortunately does not have. Only this therapy will give our daughter a chance for life and independence when we will no longer be able to care for her… Unfortunately, its cost is enormous! We must raise about 9.5 million zlotys ...

Currently Anna is under the care of SPSZOZ Zdroje in Szczecin and she is undergoing intensive rehabilitation which only slows down the progression of the disease. The cost of the rehabilitation is not small either and must be financed by the entire family.

9,5 million is a huge amount of money and unattainable for our family, but we strongly believe that thanks to your help we will be able to collect it in full. We therefore ask you for donations and to share our appeal with as many people as you can reach. This is the only chance for Anna to live…

Joanna & Michal - Parents

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