I hope you have time to read a little bit about our life story and the tragedy we are trying to get through.
We are a family of simple people from Măgdăcești Village, Moldavia, who had a lot of prayers to have a child.
God listened to our prayers and gave us 4 children at once - quadruplets.
Well, at 32 weeks i gave birth to Michael, Michaela, Ecatherina and Galina. That moment we woke up alone with 4 angels, because our relatives and friends disappeared, we understood that we must be strong for them.
The first signs that something was wrong appeared in 2019 december, when Galina suddenly gained weight and she started to move less and less. We went to the pediatrician and he assured us that everything is fine, the reason why Galina moves less is the weight. But the mother's instinct told me that it was something more than that, so I consulted several specialists. They suggested us to do a genetic analysis on everyone, suspecting that Galina would suffer from spinal atrophy. On March 14 -th, I received the results from Romania, where the diagnosis was confirmed for the second time ... I felt that the earth was running away from my legs ... two of the four quadruplets were ill, Galina and Michael are having spinal atrophy of type 1. Spinal muscular atrophy (SMA) is a disease of the motor neuron. This is a relatively common "rare disorder": about 1 in 6,000 children are affected, and about 1 in 40 people carry the gene. SMA affects the muscles throughout the body, although the proximal muscles (closest to the trunk - ie shoulders, hips, back) are often the most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of the respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems.
I cried for many days from hearing this news, until I realized that crying does not cure them and I have to do much more for my children. We immediately started the steps so that our children can benefit from the treatment that ensures a better life for them, Spinraza, but which, unfortunately, cannot cure them. Our ultimate goal is ZOLGENSMA. It is a vaccine worth $ 2.1 million, which can stop the disease from progressing, but which can be given until the age of 2 years. Both children need $ 4.2 million, money that my family wouldn't earn in two lives. As a mother, I come on my knees and I beg you all to help my children. Without people's help, my family is powerless...