Beginning of April, with the arrival of spring, the brightest sun appeared in our lives – Hanna, our beloved daughter. Her appearance showed us how little we knew about love. Her birth changed everything. First months passed, we were slowly getting to know each other and have begun to create a new world, our world. And then first signs started to emerge that suggested something was not quite right. At first, we did not want to believe our thoughts. This couldn’t be right! But there were more and more signals that pushed us against the wall.
During the first months of her life, Hanna did not show any signs of the disease. Problems started at the end of the third month of her life. She stopped moving her legs as much, she began to breathe using her stomach and not her lungs as she should have. She did not turn or raise her hands up. Minutes spent laying on her tummy could have been counted with the fingers of one hand because her excruciating cry would break our hearts.
We couldn’t wait any longer, we started looking for help. Originally, we came from Greater Poland, but we have lived in London for several years. We exchanged our first dream holiday together for doctors’ visits and searching for help for Hanna.
Initially, reduced muscle tone was suspected. We were terrified with the diagnosis, but we thought that appropriate exercises and rehabilitation would sort the problem out. Unfortunately, the worst was yet to come! We will never forget the visit to the hospital and the conversation about the results of genetic testing the facial expression and the tone of the doctor who told us that Hanna suffers from SMA type 1 will haunt us forever. In one moment, our whole new world that we had created, collapsed. How could this be? We couldn’t breathe, we couldn’t say a word. Nothing made sense anymore. It was meant to be perfect, however we knew straight away that we had to find a way to save our baby daughter, that we will do whatever it takes to save her and to give her the best life that she could possibly live!
Can you imagine a situation where the only way of spending time with your little child is long hours of painful rehabilitation? That instead of a peaceful sleep in the company of your child’s favourite toy, they fall asleep to the sounds of the medical equipment that controls their breathing which could stop at any time?
Last Christmas showed us exactly what we are fighting with! We are walking along the edge from which we can fall into the abyss at any time. A simple infection that Hanna caught, led to the loss of her ability to breathe independently. We have spent 2 weeks in intensive care surrounded by machinery that supported Hanna’s life functions. When other people enjoyed the festive season surrounded by their beloved ones, we were dying out of fear. Every entry to Hanna’s room brought up extreme emotions. Every phone call from the hospital paralysed us. Minutes, hours, days passing at a slowed pace determined by a quiet peak, peak, peak… Silent nights interrupted by the scream of a mother in despair, fighting for her child’s life.
Available treatment can give our baby daughter a better functioning every day but it will not stop the disease from developing, it can only slow it down. If we knew about the disease right after Hanna’s birth, we could have reacted and stifled the development in the bud. Unfortunately, there is no time to think what we could or couldn’t have done. We have to act, and we have to do it fast. We need to involve all, known and unknown, who can help us raise funds for the astronomically expensive treatment available in the United States. Innovative gene therapy costs over $2m. This is the price we have to pay to provide our precious daughter with a life that is as close to normal as possible. The only condition is that for the treatment to work, it must be given before a child’s second birthday.
We will fight until the end because, even though the goal seems unreal, we believe in the power of people and good will, who will help us succeed in our fight for Hanna’s health. The truth is that, without you, we cannot win against the monster that attacked our daughter. The treatment in the USA is the only chance for Hanna. It’s the only chance to stop the fear that we experience every day and night. It’s a chance for a life away from hospitals and doctor’s offices, away from respirators and constant pain. A chance for her to become independent and to enjoy a carefree childhood.
When I sing to her in the evenings that I will give her a star from the sky, I only mean one thing - that I will do everything to save her life!
Please join us in this fight and please help us because we will not get a second chance.