Mania Pomagania dla Frania
Little Fighter Franio with SMA type 1 sickness
29 March 2020 in Rotterdam! Big collection event in Rotterdam!
Franio Marcinkowski is a 16 month old boy fighting the spinal muscular atrophy type 1, a sickness slowly taking away his life. Franio is the oldest baby in Poland with this type of SMA - most children dies before reaching 1 year of age. This is why we call little Franio a fighter! And we fight with him!
Franio was born a healthy baby, strong beautiful baby boy. His mother was looking forward to the happy future together. At the age of about 3 month old Franio stopped moving his hand and still was not able to lift up his head. First diagnosis did not show anything to be worried about. Some rehabilitation was supposed to help and indeed, at first, it seemed as if Franio was doing a little better - he started moving his hand! The hope was soon to be over. More in-depth research had led to a terrifying diagnosis - spinal muscular atrophy, type 1, a deadly genetic sickness that very slowly takes away basic functions, from the ability to move, to the ability to breathe. Franio's parents were left to watch him die in a horrible pain, with no hope whatsoever. Franio's mom said:
"I didn't know I could do it. From the very beginning of his illness, I am being convinced that there is no such thing that a mother fighting for her child's life will not do. I'm exhausted. Not physically, but mentally, because paralyzing fear that accompanies me every day. During the night, I look into the room with anxiety to check if all devices are working properly."
There is a cure! Gene therapy in the USA which could not only safe Franio, but make him a healthy boy that will be developing like his peers, day by day. However, the price for this therapy is shocking. 9 milion zloty (~2,5 milion euro)!!! There is hope. Thanks to thousands of people, the foundation siepomaga.pl has collected already over 6 milion zloty.
No parent and no child should go through this alone and we are very grateful and thankful to all those amazing people out there who are helping us to get the full amount and send Franio to the USA to win his life!!!
More information, also in Dutch:
Link to the general collection in Poland, also showing the progress of collected funds:
