Nothing but sheer happiness

It was not until recently that little Alexei could sit straight up in the wheelchair. Neither could he imagine living in a big family house or going to school with other kids. Today, the seven-year-old boy lives with parents, two brothers and a sister.

Elena Semenova
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ЮНИСЕФ в Беларуси
02 July 2019

It was not until recently that little Alexei could sit straight up in the wheelchair. Neither could he imagine living in a big family house or going to school with other kids. Today, the seven-year-old boy lives with parents, together with two brothers and a sister. His own room is stuffed with cars and dinosaurs, and he is preparing for elementary school. What is most important, he knows that he is loved and cared for.

'This is a Triceratops, and this is a Diplodocus. And this one here is a T-Rex, the fiercest of all,' Alexei catches us at the entrance door and shows around the house. Our excursion starts in his room by meeting all the residents.

The boy gives us the winning smile. He is excited to meet new people, just like all the kids who have the confidence coming from sufficient support and comfort.

Due to the multiple congenital developmental defects of the musculoskeletal system, he lacks the whole lumbar-sacrum section of the spine. Furthermore, his knee-pits were webbed, and he could not unbend his legs. Tatiana, who became Alexei’s legal custodian several years ago, has taken him through many complex surgeries and a long rehabilitation period after, during which the boy had to wear compression-distraction Ilizarov frame.

‘It’s a miracle of adapting,’ she says. ‘Liosha’s weight was 13 kilos, and the frame was 3 kilos more. I would have hardly breathed if I had to wear it, while Liosha had mastered climbing up the couch, the chair and moving around the house at ease,’ her voice arouses with admiration as she speaks.

Леша лежит на кровати
ЮНИСЕФ в Беларуси

‘I first saw Liosha when he was two-and-a-half years old. At that time my youngest son turned eleven and the elder kids had grown up too. I seemed to recover some excessive emotional reserve, the “maternal surplus” enough to raise one more child, even with special health needs. Soon I was granted a chance I had been looking for. I accidently came across the adoption database, and there he was, one-hundredth or two-hundredth kid amongst others. I saw him and I recognized the smile. You know this feeling when you suddenly see someone you know in a crowd.’

Tatiana joined a group of volunteers to visit the children care home in Mogilev. Before unveiling her plans to the family, she wanted to ensure to be capable of taking responsibility for a child’s life. The care home officers were hoping for Liosha’s adoption to Italy, therefore Tatiana had to wait for some time.

Of course I was happy for him, but still kept following up on his life. At the age of four, he still was not adopted and then was moved to another orphanage. I decided that the time had come to act.

'Of course I was happy for him, but still kept following up on his life. At the age of four, he still was not adopted and then was moved to another orphanage. I decided that the time had come to act. By then, I used to visit Liosha once a fortnight on weekends. My husband joined me in one of my visits. All of a sudden, Liosha called me “momma”, which made me confuse a little. My husband was shy and hesitating too, waiting for us in the lobby. Having lived in the orphanage since 9 years of age together with his two younger sisters, my husband was way too far from romanticizing the adoption process'.

Everything changed at once as the three of us went out for a walk. My husband lifted up Liosha and held him for a while. I suddenly saw him the way he was when our children were small. On the way out he said: ‘We must keep him’, so we initiated the adoption process. At first, Liosha came to visit us for the three summer months, and then we managed to keep him for good’.

Леша в кресле
ЮНИСЕФ в Беларуси

The adjustment period was not easy. Tatiana had to start from scratch teaching Liosha all basic things. The foster parents had to deal with most of the medical and administrative issues on their own, often lacking important information and support.

Family-centered casework practices are not yet established in Belarus. It should be a comprehensive effort embracing legal, administrative, psychological and medical activities. In 2018, United Nations Children's Fund (UNICEF), in cooperation with Priorbank JSC, has launched the national program called “Family for every child”.

Joining the Program allowed Zhavnerovs family to arrange necessary consultations with pediatric neurologists and surgeons. Despite the complexity of Liosha’s case, his mother is determined to proceed with the treatment. She is eager to find possibilities for spinal restoring surgery in order to improve the quality of her son’s life.

Tatiana is an active member of the self-help groups set up within the Program. According to the social worker who supports Liosha’s family, Tatiana herself is a source of inspiration for many parents raising children with special needs.

‘Such kids are a burden for some parents. “Bearing my cross,” they say. It is too much to handle for them, and they break. They leave the children under State guardianship. We are really glad Tatiana has joined the program. Her ability to share a happy life with a special child provides an inspiring role model to other parents’.

I don’t know about the cross. It is nothing but sheer happiness.Every morning we wake up happy to have Liosha with us. His charm and charisma spark so much joy!

‘I don’t know about the cross,’ Tatiana laughs. ‘It is nothing but sheer happiness. Every morning we wake up happy to have Liosha with us. His charm and charisma spark so much joy! He has an ear for music and we can’t stop him sing all day long. Moreover, he imitates sounds like a real beat-boxer, copying the noise of a trolley bus and other noises too. You might become a radio deejay, will you?’ Tatiana smiles at her son.

Леша улыбается
ЮНИСЕФ в Беларуси

The Project gives the families, raising children with disability, a chance to socialize. Liosha and his family visit different festivities and events, organized by the social service, and participate in the master classes. He loves playing boccia and plans to take this Paralympic sport seriously.

Tatiana actively supports Liosha’s activities and believes in his future success. Today little Liosha calls the famous Russian singer Valery Meladze ‘a colleague’. And who knows, he might be in the future, providing the strong support he receives from his family. The children who are believed in are more likely to succeed.

There are 4512 families raising children with special needs in Gomel oblast. All of them require systematic comprehensive assistance. The Program “Family for every child” is aimed at developing the social patronage system. It will establish the ground for family casework in order to mobilize and enhance adaptive capacities of the families.

Леша с мамой
ЮНИСЕФ в Беларуси

The program “Family for each child” creates the basis of the system of social patronage and exists thanks to voluntary donations. You can help by making a contribution in the amount of 1 BYN using the form for online payments using VISA, MasterCard, BELCARD cards via WEBPAY.

You can also use other payment options:

1. Internet Bank "Priorbank".

2. Mobile bank "Priorbank".

3. Bank transactions via Priorbank ATMs.

4. USSD-request *222*22# in the amount of 2 BYN (for MTS subscribers).

5. Payment through the ERIP system "Raschet".

Everyone has a power to change lives for the better!