Stories of Hope

 Stories are powerful tools to affect changes in us. That is why I would like to very briefly choose a theme on the Christmas Spirit from Louisa May Alcott’s: “A Christmas Dream and how it came to be true”.  It is based on the story of a rich 10-year-old child, Effie who is bored with the thought of Christmas, whilst she watches her mother arrange a pile of gifts two days before Christmas. Her mother reminds her about Charles Dickens’ protagonist, Uncle Scrooge, who hated Christmas until a strange dream showed him how dear and beautiful it was and that made a man of him.

When Effie’s mother asks her why she is tired when it should be the happiest time of all the year, the little child responds that perhaps it wouldn’t be so, if she had something new this Christmas. The little girl tells her mother that it seems poor children have a better time than the rich at Christmas, because they are freer from the entrapments of the rich. Effie wistfully says she would like to be like a beggar girl.

That night Nursey, the little’s girl’s nurse, tells her the best of tales so that when she goes to bed, her head becomes a curious jumble of Christmas elves, poor children, snow storms, sugarplums and surprises. Effie dreams of herself sitting on a stone, alone, cold, thirsty, tired and totally forgotten by others, in the middle of a great field. In her dream she hears a voice and sees a light that steadily gets brighter and then encounters a Christmas Spirit. The Christmas Spirit tells her that he was on a holiday to find children from all parts of the world once a year, to make them merry. The Christmas Spirit then shows her the place where he lives and where she sees all the other Christmas Spirits getting ready to go on a holiday. On this one day, they are allowed a holiday to roam about the world and bring happiness to children who would let them in.

Janina Gomes

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A Physician’s Perspective on Treating Rare Diseases in Children

Let me start with a true story.

A hopeful young couple loved each other and married outside their caste and language boundaries. They were a middle-class, educated couple who were confident that they could make a life together with opportunities in a big city.

A baby was born to them, and slowly the husband and wife were able to convince their respective families to lay their differences aside and come together, as they themselves had demonstrated it was possible. All was well till the elders in the family noted that at six months age the baby was a bit slow and not doing the things that one would expect for its age.

At this point I was consulted about this developmental delay in my capacity as a paediatric neurologist — someone who cares for babies and children affected with diseases of the brain, spinal cord, nerves and muscles. A delay in development is a sure warning sign that there is always something causing the deviation in normal development and milestones.

A Rare Disease—and Fatal

Often the primary suspicion would be to look for any problems within the brain, and that is indeed what we proceeded to do in this instance when we did an MRI scan of the brain. We detected abnormalities that further led us to an unexpected diagnosis of the rare Menkes disease, which is universally fatal in the first few years of life as the rare existing treatments fail to make meaningful changes.

Day in and day out we deal with children and families affected with rare diseases of the brain and nervous system. This is a glimpse into the lives of families thus affected as well as of those of us who treat them.

The first thing that would strike our mind normally would be, “How can babies get brain problems?” Usually, one would not be wrong to think thus, because in the normal course of events diseases affecting the brain — such as stroke — are often lifestyles disease, caused by the choices one makes, such as what one eats, how much one exercises or even one’s habits, such as smoking.

But these little ones have not seen enough of life to have these kinds of issues. So how can a new-born baby have a stroke? Yet this is what we see and treat every day, and these are oftentimes caused by rare genetic diseases that might make the blood stickier than usual, causing the clot to form easily and thus throw a stroke by blocking a blood vessel inside the brain. We mostly see infants and little ones suffering from rare diseases, eighty per cent of which are caused by genetics. Contrary to what is often generally believed, one does not need to have a family history to suffer from these rare genetic diseases.

Dr Ann Agnes Mathew

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I had seen Ella a few times in the church on the back bench, but her disfigured face had made me to turn the other side and ignore her presence. This day our paths crossed each other and I was forced to get into a conversation. Ella said she had a desire to talk to a sister, yet her shame and fear kept her away. When I stopped to listen, she came out this most moving true story.

From Romance to Rejection

While she was still in high school, a young man belonging to another religion fell for her beauty, Her parents were against inter-religious marriage. Intoxicated with their youthful love, she left her home and settled in a distant land. After five years of life together, and with a little baby girl of four years, things started turning sour. One day, under suspicion that Ella flirts with other men, her husband pushed her on to the fire while she was cooking and left for better prospects with a woman he loved. A kind-hearted neighbour helped Ella to recover in the hospital. After a month, when she returned to her rented room, she had no idea of what had happened to her child. Her world had been shattered. Since she had cut off all her family ties, she could not think of returning to her native village with a disfigured face. So, to make ends meet, she took up washing dishes for families.

Sr Theresa Viegas PBVM

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She found God in her own ways. Joined a convent and left. Fell in love with a very unlikely person. Faced isolation, serious illness and death. Felt God’s hand through it all.

As children we learnt catechism during summer holidays. We enjoyed stories and parables from the Bible. As practiced in most of the parishes of rural tribal areas in Odisha, summer vacation is the perfect time to learn catechism. We used to stay in the boarding school for a month. Initially we enjoyed attending regular Sunday Mass and frequent Confession. Being children, we felt that we were loved by Jesus. But gradually, when we grew up, we started reasoning on church teachings, and defend our own thoughts and perspectives.

As I moved to the city for my higher studies, I realized that church services were more meaningful and attractive than in the village. In the villages, our way of life is more concentrated on manual work to run our house and family. People also tend to believe food comes from hard work and not by praying or going to churches. Sometime going to church becomes an obligation, without being drawn to Jesus. I have seen many (nominal) Christians who have never experienced or discovered Jesus in their life. The fault is not only theirs, but also of the church and its role in taking care of their spiritual needs.

Alma Grace Barla

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Chantamma worked as a “coolie” worker till the age of nine. Today she is doing Engineering in the prestigious Indian Institute of Information Technology, Nuzvid, Andhra Pradesh. On asking how she achieved this feat, she blushes and says, “It’s all due to Don Bosco Navajeevan, Vijayawada, and Fr. Thomas Koshy.”

Chantamma Vilugudi was born in a small village called Chigudipadu in Krishna District of Andhra Pradesh. Her father Kandha Rao and mother Lakshmi Kandamma were both agricultural labourers. They belonged to the Madiga community [traditionally engaged in shoe-making].

Chantamma was the youngest of three daughters. The family, with land of their own, lived in a small house allotted by the government. Since her father suffered from ulcers and her mother got frequent migraine attacks, they could not go for work regularly. Hence, at the age seven, Chantamma joined her sisters in doing manual work in others’ fields.  Poverty, illness and the sheer inability to support three daughters left Kandha Rao and Lakshmi with no option but to ask their little ones also to contribute to the meagre family income.

As a result, Chantamma had no time to go to school, to play or even to take rest. Deep inside, this bright and intelligent girl longed to go to school to learn and to have fun, but these were dreams beyond her reach. She had no one to turn to for help. “This is my fate,” she would tell herself, stoically suppressing the pain in her heart and resigned herself to the daily drudgery of working in the fields.

At that time Don Bosco Navajeevan launched an Anti-Child-Labour Campaign in the State of Andhra Pradesh. Rallies were conducted and door-to-door surveys made. One day, Ms. Syamala, a social worker on the staff of Don Bosco Navajeevan, visited Chantamma’s house and learned about the girls’ plight. She explained to the parents about the implications of child labour and how child labour perpetuates the cycle of poverty. Syamala told them about Government Hostel facilities for children and also offered them the opportunity to reside at Navajeevan and go to school. Though it was not easy, she was able to convince the parents. Finally, they allowed their youngest daughter Chantamma to go to Navajeevan. Chantamma was nine years old!

At Navajeevan, Chantamma was admitted to the residential Bridge Course for girl children called Setu. She had to begin with the alphabet! On completion of the Bridge Course, she was admitted to Class III. She was very quiet and hardworking, obedient and self-disciplined.  The girl’s spirit of determination was her biggest strength. Very soon she was sent to Class IV in a mainstream Government school.  Navajeevan kept providing all the necessary support. She was a very quick learner and a rank holder every year. Finally, in 2011, in class X, she gave a stunning performance, scoring 547 marks out of 600.

At this time there was a Government Scheme for rural students who score more than 500 marks in SSLC to directly enter Engineering colleges through what was then called Integrated Engineering Courses. For Chantamma it was smooth sailing to the prestigious Indian Institute of Information Technology, Nuzvid, Krishna District, on scholarship! After the six-year course, Chantamma will be a triple IT Engineering Degree holder.

Currently, she is an Engineering student. Her hard work and determination, with the timely intervention and support of Navajeevan, Vijayawada, has made possible for Chantamma something considered hard to achieve even for children from rich families. The Government takes care of her study and hostel. Navajeevan provides her emotional support, some other practical helps and guidance.

Chantamma wishes to live a good life and help other girls like her to come up in life. In her own words, “You have given me so much in my life… because of it I am where I am… It was a start from scratch. I want to pay it back by helping other girl-children to come up in life.”

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