A tiny girl faced with a terminal illness❗️

We have never thought that this judgement will fall after birth. We were supposed to be happy parents then, enjoying every moment we spent together.At a time when it would seem that nothing bad should have happened, we got a devastating message that no parent could handle. Your child is terminally ill- we need to start the treatment, to keep her alive.

Textbook pregnancy, without any reservations – Gabrysia was born at the Institute of Mother and Child, a few days after the deadline. After three days we leave the hospital – we have a fully healthy baby. We are the happiest people in the world, the phone rings...

Blood taken for screening from Gabrysia's heel does not give a definite result. We return to the hospital in great horror. We already feel that something bad is going to happen. Fear is mixed with despair. They take blood from her vein this time... Why?

The phone rings again – positive! Our daughter suffers from a terrible disease that destroys her life. In an instant, all these appeals, begging parents for help, standin front of our eyes. One sentence of the doctor includes that our daughter will never stand on her own legs, she will never sit down, her muscles, instead of strengthening – will weaken!

Not a single parent is ready for such a diagnosis. Hours of weeping, countless questions that no one will ever answer... Why did all this happen to our daughter?

Gabrysia went to the Department of Neurology and Epileptology at CZD. It was decided to administer the available drug by lumbar puncture. Despite the qualification of our child for treatment, there were huge complications in its administration.

We, our daughter, cried, and the doctors wringed their hands! 9 unsuccessful attempts to puncture in the spine! Our daughter was in pain, and no one knew why the drug could not be given correctly. The doctor who came to us at that time told us to prepare for further blows – perhaps the ultrasound will show a tumor or hemangioma in the lower part of the spine.

The second time the ground slumped under our feet! There was a fear that our daughter would not be the only child to take up therapy against SMA. We were terrified...

Ultrasound showed that complications with the administration of the drug were caused by the anatomical structure of  Gabrysia. The 10th attempt was successful, but as soon as we think about the next administration, the anxiety and uncertainty associated with the lack of treatment options reappears... until the heart begins to beat harder out of fear! Doctors are not able to guarantee further successful punctures.

We cannot prepare for our child's suffering. We want to look for help for her! A great opportunity for Gabrysia is the most expensive drug in the world, one application of which can save our child! Children who have already taken gene therapy begin to walk, they are not exposed to punctures every few months. There is still a diagnosis in our ears that in those days sounded like a death sentence for our daughter. There is a spark of hope in the heart that it will be possible to get a cure for Gabrysia. If there is a chance for a normal life, for forgetting once and for all the sentence we heard at the beginning, we must take advantage of this opportunity! We are afraid that we will not be able to raise funds. We will never give up in the fight for our child! This can only succeed if thousands of people decide that our daughter deserves to be saved. Thanks to you, SMA 1 will no longer be a death sentence for Gabrysia! 

Gabrysia’sParents.

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