Unique Masha

Masha is a unique girl. There are only a few people like her in the world. A gene breakdown led to a rare genetic mutation, Wolf-Hirschhorn syndrome. With this diagnosis, mortality in the first two years of life is 34%. But if a child survives, his/her condition gradually improves. Masha has passed this mark, now she is seven years old. Some congenital abnormalities have been corrected by surgeons, the rest have to be lived with. But without special nutrition, medicines and rehabilitation, life turns into existence...

At the 22nd week of pregnancy, a planned ultrasound scan showed multiple congenital abnormalities: heart disease, clubfoot of the left leg, bilateral cleft lip, hard and soft palate. Additional research at the Center for Medical Genetics confirmed what they saw, but they did not answer the main question: "What's wrong with the child?"

At birth, all defects were confirmed. And a month later, mother was left alone with a helpless baby who could not eat due to a congenital abnormality of the lip and palate. And what to do - not a single doctor could tell. Only six months later, Masha had plastic surgery on her upper lip, and the girl began to gain weight.

What about the child, why she doesn't grow and develop? Why she is in a half-asleep apathetic state all the time? Why she is haunted by constant colds, bronchitis, interruptions in the work of heart and kidneys? For five long years the same questions did not allow to live in peace.

And two years ago, at a consultation with a Kiev geneticist, everything fell into place. Looking at the child, the doctor immediately assumed that Masha had Wolf-Hirschhorn syndrome, which was confirmed by genetic analysis. This is a poorly understood and rare syndrome. And how to make life easier for Masha, what to do for her mother - the doctors simply do not know. Several operations have corrected the congenital abnormality of the soft palate, and two more have eliminated renal reflux. It's time to tackle physical and mental development.

After several sessions using the Tomatis method, Masha seemed to wake up. Half asleep and apathy remained in the past, our girl was interested in the world around her! For almost two years now Masha has been attending classes at the Sovenok Center every day. During this time, there was a huge leap in the development of the girl. She learned to walk in a walker, stand up and grabble. She began to understand words, and thanks to classes with a speech therapist, Masha developed facial expressions and  first sounds.

Masha needs daily activities like air. Without them, she again goes into hibernation, and the quarantine period was a confirmation of this. Lessons cost about 9,000 UAH per month. The goal of our project is to provide Mashenka with the opportunity to develop for the next six months.