Kolia fight against rare disease. 3

"Dear God! Save and help everyone who supported my son, thanks to whom we can treat Kolia. God! Please hear their prayers as they heard mine...". With these words of prayer, Kolia's mom starts every morning. She thanks everyone who helps to fight for the health of her son... But the woman still needs assistance, it is impossible to cope on her own, unfortunately...

Do you remember Kolia? He is a late, only and beloved child, the last hope of the parents. The boy was born with a rare genetic syndrome and multiple congenital malformations. All his short life, the baby is struggling to cope with the consequences of this disease. By his achievements, the boy surprises everyone who considers him hopeless.

After a full examination at the hospital, the doctor thought that parents would abandon the child… Multiple malformations of the Central nervous system: callosal agenesis, pointing-cerebellar dysplasia, dysplasia of the cerebellar syndrome, CNS depression, MDEG, polydactyly of both hands, syndactyly of 4 and 5 fingers on his right foot, the OLF, AIO, thymomegalia, bilateral cryptorchidism, and, finally, acrocallosal syndrome (happened only 50 times since 1979), which is characterized by deep psycho-motor development. The parents did not abandon their baby and accepted the challenge. The manifestations of the disease were severe, accompanied by hypotonia, unemotional, hypersensitivity and, consequently, irritability and uncertainty of a boy, and convulsive syndrome.

Two and a half years of struggle for the health of their son gave its results, Kolia began to recover. He became stronger, more curious about the world, and cheerful; there is a reliance in his feet which means that soon he will walk, and also Kolia begins to speak. The kid is on the right way. Slowly but surely, he is moving towards his goal to a full life!

There is still a long way to recovery and much to learn. As much as possible should be done while the baby is receptive to the learning age. But Kolia needs rehabilitation and significant funds, and parents are begging for the help of kind and caring people. Please support the kid in the fight against the disease!!!

The positive results after the rehabilitation in Truskavets: the boy is physically stronger and sits in a wheelchair. After the rehabilitation course (hippotherapy, sensory integration) he became more confident, his fear and protest are substituted by the feeling that he can, and that means he receives the interest in everything new. And this is almost the most important thing! Plus, Kolia has grown intellectually: there are many conscious actions, he helps to dress up (moves arms, legs, lifts the butt, turns around on request), he produces many new sounds, intonations, and emotions. He reaches for toys but still cannot keeping them in hands. There is a lot of work ahead: to sit down independently and confidently, controlling his body, to improve support on the feet and hands, start to walk, talk, and use his hands.

Previously Ukrainian Philanthropic Marketplace has helped to raised funds for Kolia. You may see these projects following the link.

Name: Tkachov Mykola, 17.12.2012

City: Kharkiv

Diagnosis: multiple malformations of the Central nervous system, callosal agenesis, cerebellar dysplasia, acrocallosal syndrome