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Masha Zozulya, born in 2013 - Wolff-Hirschhorn syndrome

August 15, 2020, 15:07 150 Author: Yana Lobanok deti.zp.ua Fundraising is suspended! Masha goes to classes twice a week, which we were able to pay until February. Thank you, friends, for giving the girl a chance to develop!

Masha Zozulya

Masha Zozulya, born in 15.02.2013

Diagnosis: Wolf-Hirschhorn syndrome, ZPRR, flaccid tetraparesis.

News about Maria Zozuli's treatment


Referenc: page 1, page 2

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Fundraising is suspended! Masha goes to classes twice a week, which we were able to pay until February. Thank you, friends, for giving the girl a chance to develop!

Masha is a unique girl. There are very 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 the child survives, his condition gradually improves. Masha has passed this milestone, she is now seven. Some malformations have been corrected by surgeons, the rest have to be lived with. But without special nutrition, medicines and rehabilitation, life turns into existence.

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

At birth, all defects were confirmed. And a month later, my mother was left alone with a helpless baby who could not eat due to a malformation 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.

Masha Zozulya

What about the child, why doesn't it grow and develop? Why is he always in a half-asleep apathetic state? Why are they haunted by constant colds, bronchitis, interruptions in the work of the heart and kidneys? For five whole 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. The malformation of the soft palate was corrected by several operations, and renal reflux was eliminated by two more operations. It's time to tackle physical and mental development.

Masha Zozulya

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 crawl. She began to understand words, and thanks to classes with a speech therapist, Masha developed facial expressions and the 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 hryvnia per month. Let's help Masha develop!

The family lives in Zaporozhye.

For more information, you can also contact the staff of the Happy Child Foundation

Happy Child foundation - effective help to the most needy children of the Zaporozhye region, Ukraine, since 2004

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