A message from mother:
This is my daughter Alexandra, who was born on the feast of the Archangel Michael, on September 19, 2019. But everything was too good to be true. A month after the birth, my maternal instinct started to sound the alarm that something was wrong - Alexandra started to have problems with moving her legs. We went to a neurologist and were urgently hospitalized with the diagnosis "spinal amyotrophy, type I". This was terrible news... having started a Google search to find out about this disease, I was speechless - this is an incurable genetic disease that affects neurons; children become bedridden, and by 18 months, most will stop breathing and die. I never felt such pain, but the dark days were just beginning.
I learned that in Romania there is a project in which children are given Spinraza (every 4 months, during all their lives), a medicine that can help them. But after 5 days, she was diagnosed with severe pneumonia, we were hospitalized in the intensive care unit, where for two weeks Alexandra and the doctor fought for her life. Thank God, everything worked out, except that she lost all her strength and could not even eat on her own (she is now fed through a nasogastric tube).
On December 24, 2019 we received the first dose. The emotions are indescribable: I draw 5 ml of fluid from the spine and inject 5 ml of Spinraza, without any sedatives... I find it difficult to be present at this scene, but the idea that the medication will help, inspires both of us.
I know that we are only at the beginning of the journey, but I believe in my child and in the kindness of people who will help me save my little girl!
Our ultimate goal is to purchase ZOLGENSMA, a vaccine worth $ 2,100,000, which can stop the development of the disease, but it can be administered only when the girl will be 2 years old.
I admit, this is an incredibly large sum of money, but the life of my child depends on this money, and as a parent I am ready to endure everything to help her!
Therefore, I ask all kind people who want and can help us!
Please help me save my little girl!