Stretching the boundaries of the possible
We shall try to make Lisa walk by the summer. We will do it. We shall try to stretch the boundaries of the possible.
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The first day of her life Lisa spent in the intensive care department because of the seizures that had started immediately after her birth. She was then transferred to the Gomel regional hospital for another month of examinations. The life of the Kovaliov family has changed ever since.
Her first year of life was a difficult period of running tests, selecting the appropriate medication and undergoing intense physical therapy. Development delay manifested shortly: six-month old Lisa could hardly hold her head up, and began crawling only after she had turned two. Six months earlier she was officially diagnosed with cerebral palsy.
‘Lisa has taken anticonvulsant medicine since the day she was born. The first attempt to cancel it resulted in hidden seizures: they were not visible, but still detected by the brain scan,’ says Lisa’s mother Natalia.
It is due to her mother’s attentiveness and patience that Lisa has survived till today. Natalia’s watch never ends – she is trained to notice the slightest changes in her daughter’s condition. Some seizures pass by whilst most of them urge Lisa to the ER. She has undergone an MRI brain scan thee times, and still the cause of the seizures has not been specified, as well as their frequency.
‘When Lisa was three years old, she would end up in the intensive care at least once a month. Every shortest trip to the supermarket could have been interrupted by the seizures. A cheerful child, she would suddenly turn limp, her gaze empty. The next 24 hours I was normally spending next to her bed in the emergency department. As soon as the medication would wear off, she woke up and the seizures returned. She needed constant checking’.
Proximity to the hospital emergency is critical for the Kovaliov family. Dovsk, where they live, is a small town counting not more than several thousand residents. It is remote from most of the social amenities available to the families in the larger cities. Dovsk lacks preschool centers for the children with special needs, leaving them few opportunities to socialize.
Social patronage service provides comprehensive support to the families in difficult circumstances. It may be the only form of assistance available to the Kovaliovs in their geographic isolation.
In 2018, United Nations Children's Fund (UNICEF), in cooperation with Priorbank JSC, has launched the national program called “Family for every child”, aimed at supporting families who raise kids with special needs. The social patronage system addresses many issues, from legal and/or medical advice to psychological aid.
Within the Program, Lisa is having regular speech and physical therapy. A qualified practitioner visits her several times a week with play-based set of exercises, and she is always excited to see the familiar smiling face. As for Natalia, she is happy to see Lisa get stronger every day.
‘Since Lisa was two years old, we have encouraged her to walk. She is five now, and she has long grown out of the age when children learn to walk without fear. According to the doctors, she is able to master walking. But first she needs to conquer her fear and learn to balance.’
Despite her condition, Lisa is a very cheerful child. She loves music and always turns her head to the favorite songs playing on a music channel. She loves looking at the pictures in the books, tries to hold a pen and imitates finger movement on the smartphone screen.
Lisa’s sister Julia is nine years old. The girls play dolls together; Julia teaches Lisa to draw and reads books to her. She is really attached to her little sister. As a coach, Julia is extremely proud of Lisa’s recently acquired skill of unwrapping candies.
Lisa is lucky to have a strong, loving and supportive family.
Her mother Natalia Kovaliova tries to live life between the seizures to the fullest: she takes the kids to a park, plays games, invites guests for dinner, cooks their favorite dishes, takes good care of her family. She also provides constant assistance to meet Lisa’s personal care needs like dressing, toileting, bathing and eating.
And then she saves hers daughter’s life when seizures come, and stays awake for days during round-the-clock shifts by Lisa’s bed. The husband and the elder daughter are her only help.
When Galina, the social worker, had met Natalia on the first qualifying interview for the social patronage program, she evaluated her emotional state as “depressed and introverted”. Parents who raise children with special needs are prone to emotional burnout. They feel cast aside, facing difficult circumstances on their own. Some fail to cope and place their children under State guardianship.
There are over ten thousand children left without parental care in Belarus. About half of them have a disability or special needs. 70% of these children have at least one living parent, either deprived of parental rights or not capable of taking care about the children, for a variety of reasons.
Lisa Kovaliova will not be among them. Her parents are admirably dedicated to give her a full life and a loving family. However, admiration aside, they need support and assistance.
‘The major problems of the Kovaliovs arise from both geographical remoteness and social isolation,’ says social worker Galina. ‘We work on increasing their social interactions by connecting them with other families with similar life experience. This usually gives a strong support. We have regular meetings with Natalia to discuss the next steps. She is a very persistent mother, and she knows how to set the goals and reach them.
There is no ramp at the entrance, and initially we were thinking to work towards its installation. Now, as we see Lisa’s progress, we have decided to change the goal.
We shall try to make Lisa walk by the summer. We will encourage her to walk everywhere – go down the stairs, walk on the street. This will require finding a qualified occupational therapist and bringing him or her to Dovsk. We will do it. We shall try to stretch the boundaries of the possible.
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!
