When we found out that we were expecting a baby and it turned out that it would be a baby girl, we considered it a miracle. No girl has been born in our close family for a long time. We have a two-year-old son, so when Kinga was born, we were very happy. The daughter got 10 points on the Apgar scale, she was born healthy - that’s what we thought back then ...

When we left the hospital home, we were informed that if no one called us, everything was fine. After a week of uninterrupted happiness - the phone ... We found out that Kinga and I had to come back for another blood test. There was immediate concern that something was wrong. We deluded ourselves it was a mistake - after all, everyone can get wrong, even the machines ...

At the hospital, we learned that Kinia may have some rare disease. 3 days later we found out that there was a suspicion of SMA - spinal muscular atrophy ... This is a rare genetic disease in which neurons die, therefore the muscles - responsible for movement, swallowing, breathing - simply disappear. In the worst type of this disease, without treatment, children die before the age of two...

We could not believe it ... After all, it is a genetic disease and there have never been such cases in our families! Unfortunately, after a week the diagnosis was confirmed ... Kinga, our daughter, suffers from spinal muscular atrophy. Our world collapsed, happiness turned into fear, the worst one - for the health and life of our own child.

Until a few years ago, there was no cure, SMA was a fatal disease, and children did not live up to several years. Screening tests have only recently been introduced - without them, we would have had no idea for many months that our daughter suffers from a disease that threatens her life ... Treatment was introduced in the hospital to SLOW DOWN THE PROGRESSION of the disease. Our daughter receives the drug intrathecally in the lumbar puncture - unfortunately, she has to receive it for the rest of her life . Every time the drug is administered, there is a fear that the puncture will be successful ... Kinia is very scared and crying. After unsuccessful attempts, our daughter had to be generally anesthetized. Subsequent passes took place on the second or fourth try...

Each stay in the hospital is associated with the fear of whether it will be possible to administer the drug, take blood and at which time ... Children do not cry from pain, they rather scream, they are very scared and it is difficult to calm them down. This is the worst feeling for a parent: seeing and hearing their baby like this and not being able to do anything. Every time she leaves the hospital, Kinia is sore and needs to recover. She became very vigilant ...

Is there another way? Yes! We want Kinga to receive the most modern treatment available against SMA - gene therapy ... The drug is administered in the form of a single injection. It will provide Kinga with a copy of the gene that she doesn't have (and because of which her muscles are dying). It will inhibit, not only slow down the progression of the disease!

We hoped that in Poland, as in other European countries, gene therapy would be reimbursed. We were hoping for a miracle, unfortunately it does not seem like it ... We have to set up this fundraiser and ask for help. We want to spare our little daughter pain and suffering. We want her to receive the drug, so that she will not be an continuous guest in the hospital. The best effect of the therapy is in children who did not develop symptoms of the disease, as it is with Kinga. We are asking for your help, because unfortunately we will not be able to collect this huge amount ourselves.

We want our daughter to have access to treatment like other sick children from Europe, so that she can enjoy her childhood ... Please help, because time matters ...