Our history began 16 years ago. We used to go to the same high school and it was then when our friendship turned out to be a true love. Together we toured the world, together we celebrated our successes and supported each other in difficult times, and now we are going to tell you about the day that has changed our lives forever.
When we learned that we would become parents, we were extremely happy. Many people had told me that pregnancy is a very difficult and exhausting time for a woman. For me it was a great period in which I felt very happy and fulfilled. I had the energy to work and time to complete our first child's layette. The pregnancy went surprisingly smoothly for me.
The summer of 2019 was exceptionally warm and on July 12th the sun shone bright for us - we met Franek for the first time and our new journey together began. His presence quickly freed the unknown amounts of love in us. After a few hours spent with him we already knew that we have received the best and most beautiful gift of our lives. Our happiness was infinite.
Franek was developing perfectly. When he was 4 months old, I got worried that he hated his tummy time and quickly learned how to roll over from the belly-down position to his back. "What do you want from him, not every child has to like it, he still has time" - I heard when I started talking about my anxieties. However, trusting my gut feeling and wanting the best for my child, I took him to a physiotherapist. Ironically, Franek held his head up beautifully when placed on his tummy. We got some exercise instructions. There was no indication then that it was a disease taking his strength away.
Time went by, we performed all the specialist’s recommendations and Franek's reluctance to be placed on his tummy became stronger. "Maybe he needs other stimuli for his proper development? Maybe I'm doing something wrong? " I asked myself and decided to get to know it at all costs.
At the beginning of this year we went to another physiotherapist. Franek was losing his strength. This time we were sent to a neurologist very quickly and there we heard those 3 letters – a suspicion of SMA (spinal muscular atrophy). My legs started shaking and my heart beating crazy. I didn't really know about the disease at the time, but the doctor's words sounded extremely serious to me. I was just looking for some new ways to exercise Frank, and finally was informed about suspected very serious and rare genetic disease.
Without any delay, we quickly did genetic testing to confirm or rule out the existence of the disease. We had to wait 14 days for the results. At that time, I began to browse pages on SMA, but reading it was very difficult for me.
I believed that the results to come would be a negation of the doctors' words.On Friday, February 14th, we received a phone call from the hospital. Franek got a sentence. I lacked tears, and Bartek, my husband, lacked words to soothe our fear. Our son suffers from SMA1, the worst type of a disease in which neurons in the spinal cord die. It just takes his strength away.
We promised ourselves that we would do anything possible to give our child a chance for a better life and independence. A gene therapy, which costs over $2.1 million is such an opportunity. Franek is 7 months old and the medicine can only be given up to the age of two. The earlier it is given, the greater the chance for our child for a better life. We don't have a day to waste. There is nothing worse than a child's illness.
The world has stopped for us. This beautiful, smiling boy with blond hair and dark eyes, simply unaware of a disease he’s struggling with, gives us a lot of love and strength to fight for him. We know, however, that we can't do it alone. We have no choice but to ask for your help.
Please, open your hearts. Stay with us in your thoughts. Be our support.
Franek's parents - Ada and Bartek.