A message from mother:
We are a family of simple, young people from the village of Magdacesti who always wanted to have as many children around us, as possible. God listened to our prayers and gave us four children at once....
It is very difficult to describe what our feelings were when we heard this news. We were both happy and scared. Can we handle it? Can we raise them? After 32 weeks, Mihail, Mihaela, Ecaterina and Galina were born. At that moment, we realized that we must be strong and fight for their life and health.
The first signs that something was wrong emerged in December, when Galina suddenly gained weight and became quite passive. We went to the pediatrician, he assured us that everything was ok, that the reason she moves so little is her weight. But maternal instinct told me that there is a bigger problem, so I turned to several other specialists. The latter suggested that we do a genetic analysis, suspecting that the girl is suffering from spinal atrophy. We refused to believe that something like this could happen to us. Assuming that this was a medical mistake, we repeated the tests in Romania. On March 13, due to pneumonia, Galina was put in intensive care unit ... The next day, we got the results from Romania. When the diagnosis was confirmed for the second time, I felt terrible, I even needed the help of doctors after a severe crisis. The diagnosis was confirmed; Galina and Mihail suffer from type I spinal muscle amyotrophy.
I cried for many days in a row and felt sorry for my children until I realized that crying would not help, and I had to do a lot more for them. We started contacting parents with children with the same diagnosis and realized that we have a chance and we must do everything possible, everything in our power to save them.
We immediately took action for our children to receive a treatment that would improve their condition - Spinraza, but which, unfortunately, cannot completely cure them.
Our ultimate goal is ZOLGENSMA. This is a $ 2.1 million vaccine that can heal the disease, but it can only be administrated before the age of two.
We can only hope that the God will protect my children and this terrible nightmare will one day end.
My biggest dream is to see all my kids healthy and together, as they were before!
