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Journalism of Courage
In a poignant response to the bureaucratic insensitivity, a London school is planning a unique memorial for one of its favourite Indian students.
The staff and students of the South Camden Community school will be planting two cherry trees to commemorate the life struggle of the 15-year-old Zarine Rentia, who suffered from an ultra-rare disease, Fanconi-Bickel Syndrome (FBS), and was sent back to India by the British immigration authorities.
Zarine died on March 26 in Gujarat.
Zarine and her mother Tasnim Rentia were devastated by the Home Office’s rejection of their appeal. It ruled that Zarine should be deported because her condition was “not life-threatening” and could be treated in India.
Despite being terminally ill, Zarine left an indelible memory of courage. “Her strength of character and perseverance through many difficult times inspired the respect and admiration of all who were privileged to meet her,” said Rosemary Leeke, the Head of South Camden Community School.
Zarine came to England in 2004 on a visitor’s visa. Her mystery illness had baffled medics in India but the doctors at the Great Ormond Street Hospital diagnosed her condition. The FBS rendered her bones too brittle to support the body weight and affected her kidney and liver. There are only 112 recorded cases of the FBS worldwide.
With her treatment also began a legal fight to stay in the UK, because as a visitor she was not entitled stay in the UK for more than six months. Neither was she allowed free treatment on the state-funded NHS.
With the Home Office determined to deport her back to India, the Rentia Family Anti-Deportation Campaign was launched. It soon attracted widespread support from her school.
Describing her condition, Zarine once wrote: “I didn’t know the meaning of life, freedom or independence in India. I couldn’t walk; I had no friends, no school, nothing. My mum had to carry me in her arms till I was 12 years old. My mother and father took me to six different schools in India but no school was ready to give me admission or to take responsibility for a disabled child. I am physically disabled, not mentally.”
Eighteen months ago Zarine arrived at the South Camden Community School that specialised in the education for disabled children to begin a new and the final chapter in her life. “Zarine joined at the beginning of Year 10?”, remembers Leeke. “Previously she had attended a special school in Hackney, but she was making such rapid progress in her learning that she needed the wider opportunities in order to reach her full potential. She immediately made a huge impression on everyone.”
“She was always one topic ahead of everyone,” said classmate Sahra Sulley, 15. “She would help you with work if you were stressed or behind. Seeing her every day happy and smiling, I never thought she had such an illness. I remember seeing her every day in the maths class. Whenever I look over at where she used to sit it’s just an empty space without her beautiful smile.”
With her classmates Zarine was also due to present a fashion show at the school. She was to model saris she had herself designed.
Just before her deportation, she appealed to the Children’s Commissioner: “This country has given me my missed childhood back. I have to give back my contribution to this country for giving me such a good and enjoyable life.”
In February, Zarine lost her legal battle to stay in England when, despite overwhelming medical evidence, the immigration judge Justice Herlihy refused to grant her permission to stay in the UK. Her mother Tasnim implored the immigration officials to come to the hospital and see her condition. She said: “This is the worst time in my life. I want to say so many things but I can’t. When I told Zarine the news she just cried and said, ‘Why’”. Soon, she and Zarine voluntarily returned to India.
The immigration department took a bafflingly strident line in this case and even impeded her treatment on the state-funded NHS arguing that she was not a British national entitled to free treatment on the NHS. She waited for almost 10 days before her treatment could begin, losing vital time in her struggle to remain alive.
Many in her school are still shocked and angry. Ms Robinson, one of her favourite teachers, said: “From a personal point of view, I hope that the Home Office will look carefully at what has happened in Zarine’s case and learn from it so that other people are not placed in the same difficult circumstances. To question a child’s entitlement to medical treatment when (she is) suffering from a rare and terminal disease is inhumane.”
