SMA1—three letters that destroy the life of my daughter! Please help!

When I was waiting for the tests results I was crying all the time. I still hoped it would turn out to be a bad dream, that the doctor would come and tell me that everything was going to be all right, Instead of such words I heard the sentence - SMA1- the most serious form of disease which slowly changes the child’s life into nightmare. My daughter is getting weaker and weaker day by day. She needs help that amounts to over 9 million Polish zlotys. There is the only one therapy that allows to combat SMA forever- it is the most expensive treatment in the world and we need to get this money...

Jagódka was born in 34th week of pregnancy by C-section. Before that I had got into hospital with  some abdominal pain and the doctors decided on the labour... I had been waiting for my desired baby for 10 years and I could finally get her into my hands- my little baby girl. I was so happy that I thought that nothing could change and since that moment our life was going to be like the one I had always dreamt about. If someone had told me at that time that in a few months I was going to be all in tears I would have considered him/her insane. Now I know how wrong I was believing that nothing bad could happen to my little daughter

Jagódka’s strenght started failing…

Around 6-month after being born something strange started to happen to Jagódka. Children at that time gain weight and become stronger. Our daughter was getting weaker at our eyes. She stopped rising her head, moving her arms and legs up. Every day our anxiety increased. We looked into her bed hoping it would change at last and this unknown lack of strength would finally go away. Firstly, there were those standard opinion - decreased muscle tone.
After all, it could be overcome through physiotherapy. Days passed and the treatment didn’t give any positive results.

Then we got to an excellent doctor who once diagnosed a child with SMA. It was her who sent us to undergo some more tests. We had to wait for the genetic tests for several weeks.
I didn’t want to believe in all of this and I was looking for a doctor who would calm me down and would give me a shadow of hope, a slight chance. Waiting for the test I spent hours on end in the Internet reading the stories of children’s fight. It was an ocean of tears and hours of despair. Then the doctors didn’t have any doubt. The tests confirmed their diagnosis- SMA 1, the disease in its hardest form, ready to deprive our daughter of her movements, swallowing and breath...

Life and death struggle has begun…

I remember the time when my little daughter was given the medicine that was reimbursed by Polish National Health Fund. It was maybe 40 minutes but for me it felt never-ending. I was walking in the corridor silently, I couldn’t gather my thoughts with hundreds of questions beating in my head. Why - my little baby? Why - Jagódka has to suffer so much? Why- the disease had chosen her- the little baby, the least strong of us?

After being given the medication into her spine I didn’t want to let her out of my hands. I was afraid that one wrong move may spoil everything. At that moment we have been after four injections of the medication which helps to control the disease but it is not able to stop it. Every 4 months we are going to go through the hospital nightmare, operation theatre, pain and fear. In addition to that, there are hours of strenuous and also painful exercise-  everything so as not to allow the disease wreak havoc on Jagódka’s body.

Is there any other solution?

Yes, there is ! Extremely expensive but very effective gene therapy which isn’t reimbursed in Poland. Until recently there has been the only chance to treat Jagódka in The USA. But now the gene therapy is available for children in Lublin but the cost of it is huge ! The medicine causes a genetic code change leading consequently to the production of protein that is necessary for the  body muscles. Even first application gives enormous effects.

When I saw ill children who after gene therapy were able to stand on their own feet, I felt happiness in my heart for the first time in my life. There is a chance that our baby will be able to develop, that she won’t be constantly under ventilator. How is it possible to live with such hope knowing that the therapy is out of reach of an almost every ordinary person?

There is hope in you! Great- hearted people who helped so many children!
Alone we can’t do anything but having you we become strong! So many children have taken or are going to take the medicine soon- why our daughter is not able to get it? We are standing in front of you asking for your help! We are chasing with time because what disease has take, no medication will bring back! We have an enormous amount of money to get and a terrible disease to combat but we strongly believe that we can do it, that our baby will be able to be self-reliant at last.

Our indicator is the weight of 13.5 kg
There is 3 kg left
There will be 2,9 kg in a week and the time passes inexorably. It won’t stop and it won’t wait the same as SMA. That is why I desperately ask you for help! Don’t be indifferent, don’t leave us - every single zloty counts in this help and makes us closer to the goal. 
Jagoda’s life costs 9.5 million Polish zlotys

Her mum