Masha Zozulya, born in 2013 - Wolff-Hirshhorn Syndrome
September 30, 2022, 13:25 2212 Author: Yana Lobanok The collection is stopped! The funds have been collected, thank you. The rehabilitation course is scheduled for May in the city of Kharkiv.
ВATTENTION! AS OF 03/17/2023 : The collection is stopped! The funds have been collected, thank you. The rehabilitation course is scheduled for May in the city of Kharkiv.
UPD on 09/30/2022:
After a six-month break, Masha started a rehabilitation course. All this time, the girl worked out at home with her mother, but when specialists are involved, the results are much better!
Masha can already stand on her own at the support, but she does not dare to take the first step yet. In addition to the psychological barrier, insufficient physical development becomes an obstacle. This is exactly what specialists in the rehabilitation center are working on.
According to the results of the genetic examination, Masha was selected a special diet. Thanks to proper nutrition, the girl became more active and attentive, and also gained four kilograms of weight. This is quite an achievement, because gaining weight has always been a problem for Masha.
Thanks to your help, we paid for Masha's rehabilitation course for a whole month! Thank you, friends! But money is still needed, because regular classes for girl are a guarantee of further development!
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Masha is a unique girl, there are only a few such girls in the world.
Her uniqueness is called "Wolf-Hirschhorn syndrome", and it turned out due to a gene breakdown. With this diagnosis, mortality in the first two years of life is 34%. But if the child survives, the condition will gradually improve. Masha has passed a critical milestone, she is already eight now.
For a long time, no one knew about the real diagnosis. Instead, Masha's card listed malformations: bilateral cleft lip, cleft hard and soft palate, heart and kidney defects, clubfoot of the left leg. As time passed, surgeons corrected some of the defects, but she still has to live with the rest.
Masha's mother did a great job of finding information. Thanks to this, at the age of five, genetic analysis clarified the situation: Masha has a slightly understood and extremely rare genetic disease. Doctors rarely deal with this disease, and hardly know how to make life easier for these children.
For three years now, Masha has been attending a rehabilitation and speech therapist several times a week, attending classes for mental correction. During this time, there has been a huge leap in her development. Masha seemed like she woke up and began to explore the world around her. With gestures and sounds, the baby shows her desires: if she wants to eat, she crawls into the kitchen, to her high chair. And for a walk, she takes clothes out of the closet and hugs them to herself. At the moment, Masha is unable to walk, she moves around the apartment, sitting on the priest. And she does it great!
Incredibly, the girl, who a couple of years ago was in constant drowsiness and apathy, now watches cartoons and listens to fairy tales! Here it is the result of work with specialists and homework with mom. Her daily activities must be continued. Without them, Masha will fall back into hibernation, and her life will turn into existence.
The goal of our project is to give Masha the opportunity for development for the next four months.
January 20 on the platform dobro.ua project started "Unique Masha. 2". Therefore, you can help Masha on the website of our partners.
