Romanian grandmother struggles with her grandson’s life-threatening illness
"Then, when you start asking other people those questions, they might think that you are crazy but when you realise the truth, there is no turning back, you have to face reality and start doing something about it”, adds Stan who is also the president of the Puzzle Association; a Romanian association created with World Vision Romania’s support in 2006 and dedicated to parents of children with disabilities.
...doctors are skeptical as to Robert’s life expectancy and his chances to lead a ‘normal’ life Between 50,000 and 60,000 Romanian children live with a form of disability. Seven-year-old Robert is one of these children with special needs. Just a few months after he was born, Robert was diagnosed with a rare birth defect called lipomyelomeningocele. A lipomyelomeningocele is a fatty mass that is located under the skin on the child’s back, affecting his backbone (spine) and causing back and leg pain, weak and numb legs and changes in bladder and bowel control.
If the fatty mass is not removed and the spinal cord remains tethered, the child develops neurological damage over time. Slowly, the child loses sensory and movement abilities. He or she may lose the ability to walk. Bladder and bowel function may get worse or be lost. These changes may be permanent.
When he was 14 months old, Robert underwent surgery to prevent the illness from developing, but doctors are skeptical as to Robert’s life expectancy and his chances to lead a ‘normal’ life.
“Recently, the doctors discovered a cyst located in Robert’s head – I’m not sure what that means exactly but I can tell it is serious. I wasn’t able to find peace ever since they told me this”, says Dumitra, Robert’s 53-year-old grandmother, with tears in her eyes.
Dumitra is Robert’s primary care giver as his mother remarried after divorcing Robert’s father. Robert and his grandmother both live in a three-by-three metre room in a run-down apartment building in Ferentari – Bucharest’s poorest neighbourhood, looking more like a slum than part of a European capital city.
I get very frightened in winter as Robert is very weak and sensitive and a cold can have disastrous consequences for himI get very frightened in winter as Robert is very weak and sensitive and a cold can have disastrous consequences for him The small “apartment” has a tiny, unsanitary bathroom and no kitchen and as such, Dumitra cooks their food in the same room where they sleep. She uses the same stove to boil water for Robert’s baths, as they only have cold running water. This proves especially difficult in the winter, when heat is a rare and precious commodity.
“I get very frightened in winter as Robert is very weak and sensitive and a cold can have disastrous consequences for him. I have to be careful and quick with his baths and also make sure that he is always well tucked in when he sleeps”, shares Dumitra.
The two sleep in the same bed as there is no room or money for a second one. Their only source of monthly income is the grandmother’s illness pension and Robert’s state allowance totaling around 450 – 500 RON (about US$130).
“I have health problems of my own and I have to take treatment for my stomach, liver and gall bladder. The doctors have also discovered a stress-induced form of diabetes. I worry a lot about Robert…I don’t know what will become of him in the future,” Dumitra says.
Legally, due to his illness, Robert is entitled to a special monthly allowance but has never benefited from it as his grandmother only recently found out about it.
“No one told us this. Not even the doctors that saw him all these years. It’s just since we started doing physiotherapy at the centre supported by World Vision that we found out about our rights”, Dumitra says.
...apparently; he told a relative that there is no point in seeing Robert anymore as he is going to die anyway Looking a bit shy upon the first introduction, young Robert is a beautiful, sensitive and smart child. Though he is just seven and hasn’t started school yet, he knows how to write and can also do simple math calculations. He loves to draw, his favourite cartoon character is Mickey Mouse and his biggest wish is to have a sleigh that he could play with in the winter snow.
“Lately, he has been having an even more difficult time as his father who used to visit and spend time with Robert every weekend now refuses to see him. I don’t know what is causing this…apparently; he told a relative that there is no point in seeing Robert anymore as he is going to die anyway.
This broke Robert’s heart…he hasn’t been the same ever since his father stopped coming. He is sad, he became withdrawn and less communicative. He is suffering and I don’t know what to do anymore. He had a few counseling sessions with the kindergarten’s psychologist but he is not over it yet. I’m not sure he ever will be”, the grandmother sadly acknowledges.
Currently, Robert is attending physiotherapy sessions sponsored by World Vision Romania, as part of a project dedicated to children with disabilities in Bucharest’s sector 5. As part of the support offered by World Vision, the grandmother also receives financial assistance in the form of social tickets that she uses to buy food, clothes or hygiene products. Recently, she also received help to repaint their small bathroom.
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...doctors are skeptical as to Robert’s life expectancy and his chances to lead a ‘normal’ life Between 50,000 and 60,000 Romanian children live with a form of disability. Seven-year-old Robert is one of these children with special needs. Just a few months after he was born, Robert was diagnosed with a rare birth defect called lipomyelomeningocele. A lipomyelomeningocele is a fatty mass that is located under the skin on the child’s back, affecting his backbone (spine) and causing back and leg pain, weak and numb legs and changes in bladder and bowel control.
If the fatty mass is not removed and the spinal cord remains tethered, the child develops neurological damage over time. Slowly, the child loses sensory and movement abilities. He or she may lose the ability to walk. Bladder and bowel function may get worse or be lost. These changes may be permanent.
When he was 14 months old, Robert underwent surgery to prevent the illness from developing, but doctors are skeptical as to Robert’s life expectancy and his chances to lead a ‘normal’ life.
“Recently, the doctors discovered a cyst located in Robert’s head – I’m not sure what that means exactly but I can tell it is serious. I wasn’t able to find peace ever since they told me this”, says Dumitra, Robert’s 53-year-old grandmother, with tears in her eyes.
Dumitra is Robert’s primary care giver as his mother remarried after divorcing Robert’s father. Robert and his grandmother both live in a three-by-three metre room in a run-down apartment building in Ferentari – Bucharest’s poorest neighbourhood, looking more like a slum than part of a European capital city.
I get very frightened in winter as Robert is very weak and sensitive and a cold can have disastrous consequences for himI get very frightened in winter as Robert is very weak and sensitive and a cold can have disastrous consequences for him The small “apartment” has a tiny, unsanitary bathroom and no kitchen and as such, Dumitra cooks their food in the same room where they sleep. She uses the same stove to boil water for Robert’s baths, as they only have cold running water. This proves especially difficult in the winter, when heat is a rare and precious commodity.
“I get very frightened in winter as Robert is very weak and sensitive and a cold can have disastrous consequences for him. I have to be careful and quick with his baths and also make sure that he is always well tucked in when he sleeps”, shares Dumitra.
The two sleep in the same bed as there is no room or money for a second one. Their only source of monthly income is the grandmother’s illness pension and Robert’s state allowance totaling around 450 – 500 RON (about US$130).
“I have health problems of my own and I have to take treatment for my stomach, liver and gall bladder. The doctors have also discovered a stress-induced form of diabetes. I worry a lot about Robert…I don’t know what will become of him in the future,” Dumitra says.
Legally, due to his illness, Robert is entitled to a special monthly allowance but has never benefited from it as his grandmother only recently found out about it.
“No one told us this. Not even the doctors that saw him all these years. It’s just since we started doing physiotherapy at the centre supported by World Vision that we found out about our rights”, Dumitra says.
...apparently; he told a relative that there is no point in seeing Robert anymore as he is going to die anyway Looking a bit shy upon the first introduction, young Robert is a beautiful, sensitive and smart child. Though he is just seven and hasn’t started school yet, he knows how to write and can also do simple math calculations. He loves to draw, his favourite cartoon character is Mickey Mouse and his biggest wish is to have a sleigh that he could play with in the winter snow.
“Lately, he has been having an even more difficult time as his father who used to visit and spend time with Robert every weekend now refuses to see him. I don’t know what is causing this…apparently; he told a relative that there is no point in seeing Robert anymore as he is going to die anyway.
This broke Robert’s heart…he hasn’t been the same ever since his father stopped coming. He is sad, he became withdrawn and less communicative. He is suffering and I don’t know what to do anymore. He had a few counseling sessions with the kindergarten’s psychologist but he is not over it yet. I’m not sure he ever will be”, the grandmother sadly acknowledges.
Currently, Robert is attending physiotherapy sessions sponsored by World Vision Romania, as part of a project dedicated to children with disabilities in Bucharest’s sector 5. As part of the support offered by World Vision, the grandmother also receives financial assistance in the form of social tickets that she uses to buy food, clothes or hygiene products. Recently, she also received help to repaint their small bathroom.
-Ends-
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