Frank has just had his first birthday and I am not sure if I have the possibility to light the candles on his next birthday cake. Three words have changed our lives into the hardest fight ever. The fight for life and death. And we have only few months for collecting an enormous sum of money we need to win this fight. The amount which isn't attainable for us.
Frank’s birth was a dream came truth. He was a long awaited, strong boy with the smile brightening our days. As days and weeks were passing by my motherhood was becoming bigger adventure. I felt everything was changing, but at that moment I did not expect that the change could be that big. In a short time my daily joy had turned into a constant fear and our home environment into hospital conditions.
We had not been aware that something was wrong until Frank was 3 months old and his muscles began to weaken. He stopped rising his head and moving his hands. First medical examination did not show anything disturbing. The doctor recommended quarterly rehabilitation.
After some time Frank seemed better. He started moving one hand and I was so sure we were on the right track to recovery. That little hope we had at that time did not last long, though.
During our second medical visit a group of doctors gathered around my child and that day all the fuss started. I got many doctor referrals, there were a lot of tests, examination which after several weeks eventually confirmed the diagnosis. Spinal muscular atrophy type I. At first I did not know what it meant exactly and what it entails so I have searched the web and what I have found totally crushed me. From that moment I knew that every single day brings my little boy closer to his death and his days are numbered. Since that day I have watched helplessly SMA robbing him of the ability to move, of all physical strength, disabling vital functions, weakening Frank's body resistance, causes breathing difficulties...He is suffering and his body is wasting away.
The disease was identified between Frank's 8th and 9th month which means very late. We have spent too much of precious time on searching help and answers instead on preventing it at once. The available reimbursed medicine can stop illness but cannot bring son's health back. Moreover, every dose of this medicament has to be taken with exactness and if even one dose is omitted it can cause tragic consequences.
Hospital stays, rehabilitation, mucus suction... I had no idea I can do things like this. Ever since I've found about the disease I know there is nothing that mother would not do for saving her child's life. I feel exhausted from the anxiety and fear which paralyse me every day. We gave up going outs, family meetings to protect Frank from germs and bacteria which are deadly for him. We live in the shadow of disease checking all medical devices in our son's room all the time. We are on constant alert even when we are asleep.
When I found out about Zolgensma gene therapy for a short while I imagined Frank as a healthy little boy recovering step by step. But then I realised the price of this treatment which is totally beyond our reach! My baby's life was valued at over 9 million zlotys, which is almost2 337 360 USD ! That is the price of treatment in USA, the only one that can help and the most expensive one. If anyone told me a year ago I would need such money I would never believe. Today I have no choice. All my desperation and fear I have to transform into the fight for my son's healthy life.
This kind of treatment is impracticable in Poland. The available therapy with the medicine I mentioned is only able to delay the progression of the disease, but this is only like delay of our son's death. Although the sum of money we have to collect seems almost as unreachable as the trip to the Moon and back, we have to give it a try. In future I want to look myself in the eyes and say I did my best to keep the promise I once gave to Frank. That I would do everything to save him.
This is not the way I imagined my motherhood. I knew it would be a challenge to me but never thought It would be the biggest and the most important challenge in my life. Watching Frank's suffering breaks my heart. I am afraid to sleep at night, stay alert all day and use every moment with Frank. I never know how many smiles are left for me before our time is over.
I know I ask for impossible. This sum of money is mind-blowing. But I believe we can make it, cause this belief is all I have. My baby deserves for life without pain, illness and fear in his eyes.
"This is not yet the time for heaven, sweetheart" - I tell him every day.