In the Joy of Giving Week, a look at the inspiring work of 'The Ray of Light Foundation' which aims to make sure that no sick child goes untreated.
By her own admission, Sasikala's family will find it difficult to buy medicines even to treat a common fever. In her first year of college, she was the family's only hope. But even within the first year, when she was diagnosed with acute lymphoblastic leukemia, ( ALL) following hospitalisation for severe stomach ache, vomiting and fatigue, her parents, both agricultural labourers in Tiruvannamalai, were stumped.
That was until the Ray of Light Foundation did just that – brought a ray of light into their lives. Someone had referred them to Kanchi Kamakoti CHILDS Trust Hospital ( KKCTH ) and with sponsorship from the Foundation, Sasikala has just completed six months of chemotherapy for her cancer. “We are eternally indebted to the Ray of Light Foundation,” Sasikala wrote recently, thanking her sponsors, “For poor people like us, you are God.”
Leukemia is the second most common childhood cancer in India, and Sasikala's ALL accounts for about 60 per cent of all childhood leukemias. Leukemia, or blood cancer as it is more commonly referred to, when it affects children, makes them prone to recurrent infections, bleeding and extreme weight loss. Finally, when the cancer spreads, they develop multi-organ failure leading to death.
However, it is not all that bleak in actuality. “Early detection and prompt and thorough treatment can lead to the survival of 80-90 per cent of the children,” explains Priya Ramachandran, paediatric urologist, KKCTH, and founder, Ray of Light Foundation. “But, because of the prohibitive costs of treatment, parents are unable to comply with chemotherapy protocols, as a result of which survival is only 50- 60 per cent.”
Ray of Light, she goes on to explain, is a volunteer group driven by the singular mission to help children in their fight against cancer. “Cancer is a lot of pain. If you have to go through pain on an empty stomach, you cannot get unluckier than this. Our aim is to ensure that no child should go untreated for lack of money and the treatment provided will be the best there is.”
The best can get expensive. For instance, for a child with ALL, the first stage of treatment is ‘induction of remission'. In other words, the blood and bone marrow are purged of all cancer cells. This involves multiple chemotherapy drugs, antibiotics and immunoglobulins spread over six months. This alone costs Rs. 4 lakh. This has to be followed by maintenance chemotherapy where the blood and bone marrow are prevented from turning into cancer cells. This is spread over two years and costs about Rs. 50,000 because the child is given oral chemo tablets, Dr. Priya explains.
Role of hospitals
In case of Acute Myeloid Leukemia, chemotherapy is given as four cycles over a year. Each cycle costs Rs. 75,000 excluding hospital charges. “We possibly cannot do anything significant unless the Hospital is willing to support us. KKCTH has waived all bed charges, lab charges and doctors' fees.”
The children will be under the care of a panel of paediatric oncologists at the KKCTH. Treatment is provided as per the current recommendations of the Children's Cancer Group (USA). “We will not withhold any treatment for a child, irrespective of expenses incurred. Treatment protocols are strictly adhered to.” Counselling is provided for the child and the family, in order to get them over the tough time.
To push them along in this venture, the Ray of Light Foundation solicits donations from philanthropists, holds art auctions, and charity movie screenings. They have helped 20 children since 2003. Among their biggest supporters has been Sharan Apparao of Apparao Galleries.“ Ideally we like to provide treatment to 40-50 children a year. For this we would need to build a corpus that is substantial enough to ensure uninterrupted treatment right through.” The Foundation is now participating in the Joy of Giving Week celebrations, hoping to pump in more funds to bolster the corpus.
“I don't mind repeating this over and over again – the survival rate is excellent if treatment is provided on time. It is such a shame that we lose young lives just because they do not have anyone to help them. This is where we decided to step in, to ensure that such aid is available at the right time,” Dr. Priya says. The thing is to give the child the best shot at treatment and cure. “Sometimes, the disease takes its course and we lose a child. But even when parents know that the chances are grim, they need to feel that they have done something. We are doing that – the best on their behalf.”
That is what Seeralan's father Suresh thinks too. Seeralan, only four years old, died recently, unresponsive to the best treatment provided to him. Suresh, says, “The kind of treatment my son got, the surroundings he was in (hospital), the kind attention he received from the staff – all this was certainly beyond what I could afford.” Emotionally, he continues, “Today, I earn much less than what is required to run my family satisfactorily. But one day I hope to be able to earn enough to contribute to the Foundation. I hope that no hindrance is laid in their path, and they continue to help other children like Seeralan.”