Dubai: Today (Wednesday) , Judith Ratanayake, 12, will undergo a laborious and expensive surgery called the Ilizarov technique, a surgical procedure used to relieve the constant pain she lives in and, hopefully, add some height to her one-metre-tall frame. as well as lengthen and straighten her S-shaped thigh bones.
The tiny girl with a big heart and lofty dreams suffers from one of the most common forms of dwarfism called achondroplasia, which has a incidence rate of one in 100,000 children. The condition caused her to stop growing physically after the age of two.
Dr Marc Sinclair, a Dubai-based orthopaedic surgeon specialising in paediatric orthopaedic surgery, will carry out the surgery under the aegis of the UK-registered charity, The Little Wings Foundation.
Dr Sinclair is the founder and co-director of the charity, which will bear the entire expense as the parents, Renuka and Mangala Ratanayake, who both work in a Dubai-based bank, are unable to afford the cost. They also have 14-year-old twins, Josephine and Hilary.
Every night when Judith cries out in pain as her muscles cramp and bone joints throb with the stress of bearing her weight on their twisted shape, her parents take turns to get up and massage oil into her aching joints to soothe the pain. But this condition hasn’t taken away anything from this girl with a brilliant smile and great promise as a bright student.
“I am just an ordinary Sri Lankan girl who has achondroplasia, but I love my life. I have learnt that even if you are disabled, your heart isn’t,” wrote Judith for a class project giving a heart-warming testimony of her optimism and hope for life, even as she chronicled her struggle of ten years with her condition. Judith has won many awards for elocution and writing and loves drawing and sketching. For ten years, her parents have been struggling to relieve their little girl of her pain.
“When Judith was born in 2001, there was nothing to indicate her condition. In fact, she was a longer baby than her elder twin sisters, Josephine and Hilary. Her legs were straight and her milestones were perfect until she was a year old. After that, I realised she was not keeping up to the milestones on her growth chart,” recalls her mother Renuka.
The Ratanayakes spared no effort and went from pillar to post to get a diagnosis. They were told their daughter’s bones were mis-positioned in her body. On a holiday to Sri Lanka when Judith was two years old, the doctors for the first time linked Judith’s stunted growth to dwarfism.
Back in Dubai, the couple visited Dr Sinclair, who then worked at the Dubai Bone and Joint Centre, for a second opinion. “He explained the bone lengthening procedure to us,” says Renuka. “We felt that our four-year-old daughter would not be able to live a life confined to a wheelchair for the rest of the year and the costs seemed way beyond our pocket. We had no idea that some charities could help us. So we decided to seek alternative treatments.”
For many years, Judith suffered the pain of different treatments to keep her limbs straight. The family ordered special mermaid-like braces that confined her, waist down, into a very tight brace in the night to keep her lower limbs straight.
“Judith would be in so much pain that she could hardly sleep in the night. She hated the brace,” says Renuka.
In 2007, her parents gave up their banking jobs to move to Sri Lanka so they could have family support and provide ayurvedic treatments for Judith. Renuka managed to find a job in a multinational bank, but her husband, Mangala, was rendered jobless. Yet, they continued with Judith’s treatment. However, as the years progressed, Judith’s tiny body, in an attempt to adapt to her tiny height, made a series of adjustments and the bones in her legs naturally twisted to facilitate her ability to walk.
Renuka and Mangala also began seeking people with similar afflictions who had managed their lives well and would take Judith to meet them and, one day, Judith asked her mother, “Do you not like me the way I am? Why do you want to change me? God loves me just as I am.”
Her parents were rendered speechless by the child’s observation. “From them on, I began taking Judith’s permission for any medical visits or treatments,” says Renuka.
Eventually, in 2010, Mangala, who had been without a job for nearly three years, returned to Dubai when he got a good offer from a bank. The rest of the Ratanayake family moved back in 2011. Renuka believes God has a plan, which is why he helped them return to Dubai.
She happened to read about the work Little Wings was doing and also recalled meeting Dr Sinclair in 2005. The couple then took Judith’s permission to take her for an appointment to Dr Sinclair in 2012. “Judith adored Dr Sinclair the moment she met him and when he asked her what she wanted him to do, she replied, ‘Just relieve me of my pain’.”
The Ilizarov procedure will straighten out Judith’s bones in her legs and in the process, she is likely to gain 4cm in height. Renuka is also keen to have a similar surgery be performed on Judith’s short arms. “I want her to be able to help herself and be self-reliant,” she says.
Judith will require extensive physiotherapy for months after the surgery. The doctor has promised progressive relief from pain. But there will be no instant relief. For Judith, the battle to lead a pain-free life is about to begin.
