SMA has silently started weakening our daughter. The illness wants to destroy her in spite of all the efforts that we make to prevent this process - and it progresses very quickly. We're scared to stop keeping an eye on our little Tosia for even a minute in a fear of the worst...
The clock counting the time in the lives of parents usually means joy, meals, snooze. For us though, the time passing by is spent on rehabilitation, staying awake, servicing the specialist hospital equipment.
For several weeks, we were oblivious to the illness of our daughter. We were told that Tosia was growing well and that we should not worry. In less than 2 weeks, when we found out what was happening with our little baby, the world that we had known, disappeared irretrievably.
The peak of the coronavirus pandemic, confusion, hospital procedures. Tosia came to the world in very tough times. The world was dominated by fear. For us, at this time the most important story of our lives started. Short time had passed when fear started to accompany us steadily as the SMA type 1 diagnosis was confirmed by the doctors meaning that it will stay with us for many years to come. And may not ever disappear from our lives.
Tosia was born healthy. The first medical examinations pointed at a lower muscular stress, but rehabilitation was supposed to solve this problem. Due to the pandemic this form of aid could not be provided, so we waited. Next examinations. Visits at various specialists. Nothing to worry about. Eventually, we came to a psychotherapist who spotted that something was not right. We had to have certainty in order to continue the therapy. The doctors stated choke-provoked pneumonia, which is a characteristic illness for SMA. In the next step, some tests were carried out. Luckily, the results were made available to us very quickly, but... they gave answers, which no parent would ever want to hear. It is the most dangerous, mortal type of spinal muscular atrophy. SMA type 1 - the illness that was going to change the way our world would look like.
The great future, which we were dreaming of, became limited to here and now. Tosia received the first dose of the refunded medicine. We obtained the support of the rehabilitation team, the necessary equipment, but it is still not enough. In order to secure the possibility of Tosia's normal functioning in the future, in order to save her from the progressive illness, we need determined action. Our only hope is the innovative gene therapy, which could prevent the progression of the SMA illness and let save at least some part of the capabilities and life functions of our daughter.
The room, which we had prepared for our newborn daughter has been converted into a hospital room. The toys and colorful decorations have disappeared. A respirator, an oxygen bottle, a rehabilitation point, the equipment necessary for fitness support. The illness is with us at every step, we will not be able to avoid this sight in our everyday life, against which we now have to face. The worst is the fact, that in spite of the actions already taken, in the case of Tosia, the illness is progressing very quickly. Physiotherapists alert, that feeling in the feet is low, and her breath is uneven in spite of the engagement of the specialists. We're scared what is going to happen next, what else will be attacked by the illness and of what our little baby will be deprived of.
Until recently we were sure, that we are a step ahead of the illness. Unfortunately we quickly have come to a conclusion, that our opponent is much stronger. The only rescue for Tosia is a gene therapy, whose cost is more than 9 million PLN (over 2 million EUR). This is the price for the life, health and the future of our child. For the hope, that Tosia will have a chance for at least partial independence and that the illness will not take away everything. In order to boost the chances of effectiveness of the therapy, the medicine has to be given to her as soon as possible, otherwise some adverse irreversible changes will happen in the organism, against which we will not be able to fight.
Our little girl needs help! We call everyone for help, we ask for engagement to save our child! There is no other way to cure the illness and although we know that what we ask for is a lot, rest assured that we will do all that we possibly can. Only together we can face the illness and prevent its dramatic progression until it will be too late.
➡️ Follow The fate and the fight of Antosia for health here: Antosia Dąbrowska walcząca z SMA
➡️ You can support Tosia's fight against the illness by participating in the bidding initiative: Licytacje dla Antosi Dąbrowskiej #uratujAntosie