It was hard to miss the energy and cheer inside the otherwise quiet park near the Nithyatha centre at Aurolab last weekend. From six months old to 16 years, about 50 children took over the slides and swings and ran around playfully. Unless one zoomed in on their faces, one could never guess the heartbreaking or inspiring stories they hid.
Take the case of 16 years old Jayanthi, whose father passed away and her mother abandoned her. She is all set to write her XII Boards from NSKP School in Theni next year. She is able to dream big today because of her paati Velthaai, who did not miss a single round of check-up, treatment and follow up for her grand daughter, travelling 75-odd kms by bus whenever the doctors at Aravind Eye Hospital (AEH) in Madurai called them.
Madurai, Tamil Nadu, 24/05/2018: For Metroplus: Ring of hope awareness camp at Auro Lab of Aravind Eye Hospitals for retinoblastoma kids in Madurai. Photo: R. Ashok
Jayanthi was among the first batch of patients enrolled at AEH in 2004 under the Ring of Hope programme that provides free treatment for children with retinoblastoma, an aggressive and often fatal eye cancer. Ocular oncologist Dr.Usha Kim during her career saw enough children dropping out of the treatment cycles owing to the expense and the unpredictable outcome.
“The fight was always at two levels,” she says, “first to identify the child with retinoblastoma and then salvage the affected eye to save the vision and life of the child.” But in those earlier years, whenever she referred the young patients to other hospitals for chemotherapy or radiotherapy, she found the families did not follow up given the cost of the treatment. “We lost lots of kids in follow-up after the diagnosis,” she points out.
Dr.Usha then started raising funds through in-house donations, from friends of Aravind and various other sources to launch the Ring of Hope project that helped to set up 12-bed chemo ward at AEH where children from poor families could avail of free treatment and stay. “We are also extremely stringent with follow-ups and do home visits to drive the importance of regular treatment,” she says.
Madurai, Tamil Nadu, 24/05/2018: For Metroplus: Ring of hope awareness camp at Auro Lab of Aravind Eye Hospitals for retinoblastoma kids in Madurai. Photo: R. Ashok
In the last 14 years, 900 children have benefited under the programme and 584 have been cured. Dr.Usha says there is still a long way to go. With low awareness and high poverty levels in India, people tend to visit the doctor only when the disease reaches an advanced stage.
To create awareness about retinoblastoma, a common intra-ocular tumor and one of the most devastating types of cancer in kids, the department has been conducting annual sunshine camp with its patients in different stages of recovery. It coincides with the global awareness week in May. The families are invited to spend a day outside the hospital wards, forget their worries, share the experiences from detection to cure and look at a life of unbridled dreams.
Ten-year-old Kamali dreams, even though she lost vision in both her eyes but the doctors could arrest the cancer from spreading and save her life. She says the opportunity to live is a gift from God and with will power has developed into a sprinter and won medals in different competitions. The way she thrusted herself high in the air sitting in the swing gave a glimpse of her determination. “I respond to sounds extremely well and can manage myself,” she says.
Retinoblastoma, also known as cat eye symptom because the pupil of the eye develops an odd white reflection which can be spotted at certain angles, mostly occurs in children from birth to five years. “In the US, the disease is 90 per cent curable whereas in India, 90 per cent of the children die because of late diagnosis and delayed treatment, points out Dr.Usha.
The cancer genetics testing lab at AEH has helped many siblings from losing their eye, she says, as we meet eight-year-old Diwakar Pandiyan who first came to AEH at the age of two when both his eyes were affected by retinoblastoma. The doctors could save one eye and removed the worst affected giving him a prosthetic eye. Since his mother also had retinoblastoma when she was a child, Dr.Usha and her team regularly followed up on her when she was pregnant the second time. When her daughter Rithika Sri was born, the mother was aware enough to bring the child to Aravind’s orbit clinic when she was 12 days old. Ever since both the children come for regular check-ups and are now healthy and cancer free.
“It is extremely important to detect the disease early to save the vision, eye and life,” asserts Dr.Usha. Today AEH is the nodal referral centre in Tamil Nadu for treating poor children with retinoblastoma free of cost. But people, inlcuding medical practitioners are not aware of the facility here. “More awareness about the disease and its treatment is required at all levels because it involves specialised services outside the realm of eye care,” she adds.
Madurai, Tamil Nadu, 25/05/2018: For Metroplus: Dr. Usha Kim of Aravind Eye Hospitals in Madurai. Photo: R. Ashok
QUOTE:
Retinoblastoma is a rare cancer that is not normally screened in kids. It can be detected early even by parents. Any change in the child’s eye, including bulging or bleeding, pain or redness needs to be reported immediately
