It is hard for us to collect our thoughts, wipe away tears and beg for help for a child who seemed healthy just a few weeks ago ... We were mistaken in thinking that we had a completely healthy child. While watching her sleep, seeing her smile greeting us in the morning, we were mistaken, thinking that we have everything, that we don’t anything more to be happy ... Now that we have known the truth for several days, our world has shattered and everything that has so far seemed simple, has now begun to crush us.
Our daughter was born in December. She changed our world for the better, setting new paths, posing challenges. A tiny, beautiful being who, we thought, will be with us forever. Today it turned out that this is not so certain. Our daughter suffers from a terrible disease that has so far killed many children like her! SMA type 1 - a curse which defines her future.
Instead of sitting normally, Sandra starts to weaken, instead of walking, she stops moving, instead of crawling, she starts to choke! Her fate depends solely on the treatment, which can hopefully begin soon. There is a drug that slows down the disease and prevents death, (more information about the medicine - HERE) We don't know how Sandra will respond to the treatment, how she will cope with the injection to the and whether it will enough ... We now live this nightmare - our child is so tiny - this is our great grief and yet great hope.
We need to get rid of this disease once and for all! We know this is our chance and we have to use it! Gene therapy costs are unimaginable - over $2 million. We don't know how we will get the funds, but we can't afford to waste the time we have left.
When Sandra was 1.5 months old, we were visited by a doctor who noticed her legs. Sandra’s arms moved normally, but her legs were limp. A referral to a neurologist was like a one-way ticket. Back then, we didn't know what it meant ...
Until the end of the medical tests, we prayed for a miracle – we prayed that final genetic tests would free us from this nightmare! Then came the doctor, who gave us a single piece of paper - the verdict – the result was positive. Positive – our worst nightmare. Nothing in this story is right. A terminally ill child, who was supposed to have a whole life ahead of her? Instead of growing, will she have to curl up within, lose strength, life, time?
We did not know anything about SMA, we hadn’t realized that this disease is so cruel. The doctors explained this new reality to us piece by piece. With 4 types of this terrible disease, our daughter has type 1, the worst. Never before have words hurt so much than when the doctor told us the news. Why her? The weakest one of us three...
We returned home devastated. We had the test results in our hands and a referral for rehabilitation. The hospital ordered a medicine that will be given to Sandra next week. What's next? We know that treatment will delay death but will not cure our child. We will buy time, but we will not be able to buy peace. Waiting for the baby, we bought everything we needed - a pram, a cot, nappies. It turned out that it wasn’t enough. We need a physiotherapist, a respirator, and knowledge about taking care of a child who will not grow and flourish, but instead will weaken with every day.
This was not meant to be! The sound of lullabies were meant to sing her to sleep, not the noise of the respirator. Our child was supposed speak her first words, not choke on her own saliva. We came face to face with a disease that destroys lives. An insidious kille, yet love, strength and determination make us strong. Sandra must live, she must get a chance that some like her did not get.
We’re not asking – we’re begging you for help. Our daughter’s chance for life lies with an innovative gene therapy invented in the United States. One administration of the drug should be enough to cure this terrible disease forever. We believe that we will succeed, and nobody has the right to take this faith from us. Every parent of a sick child must fight for them with all their strength! This is our only goal now! We are begging you for help. We won't make it on our own ...