Dubai: Over the last two years, Gulf News has been following up with Judith Rattanayake, a 14-year-old girl suffering from a form of dwarfism called anchondroplasia that required multiple rare surgeries to relieve the constant pain in her legs, straighten her deformed S-shaped thigh bones and allow her to stand on her feet.
The courageous and bright student studying in St Mary’s School had to bear excruciating pain before the first series of surgeries began on her left leg last February in Dubai. The pain was mainly due to the technique used in the surgery, which requires an external fixator with pins to help keep the bones straight and remove the distortions. A UK-based charity called The Little Wings Foundation took up her case, as her parents Renuka and Mangala Rattanayake were unable to afford the cost.
Following the success of the surgeries on her left leg, which straightened her limbs and added height to her frame, Judith underwent the second phase of the two-year project to correct the deformity on her right leg.
Despite the agonising pain she had to bear with 19 pins put into her left leg the first time and four on the right in the second, Judith kept strong and was full of positivity until she gained her ability to walk painlessly.
Judith can now walk short distances with the assistance of a walker or her family, and her height has gone up from 98cm to 140cm due to the automatic correction on her bones. However, says Renuka, the height gain was not the main motive because the deformity was causing her extreme pain.
Looking back
“She couldn’t walk at all because it was extremely painful for her every time she put weight on her legs,” says Renuka. “Her left leg needed up to five surgeries to fix the deformity, but during all this time she never grumbled, so this didn’t give us a reason to grumble.”
After every major surgery, Judith had to stay at home for a month, “but she insisted on going to school. Though she was wheelchair-bound, she caught up with all subjects and passed with excellent marks. Even for subsequent surgeries, she took just that day off and was back at school the next day,” says Renuka.
Challenges
One of the main challenges for the family was watching their child bear the pain of the rods, which were screwed onto her bones and had to be later unscrewed. The pin site had to be cleaned almost everyday.
“It meant cleaning the 19 holes and removing the dried skin around. The external fixator also needed to be corrected in measurements and so every time we turned it, it pushed the bone from one side and got pulled from the other side. She used to feel the bone turning and moving. This was on a daily basis. We used to give her pain killers but it didn’t stop the pain.”
Earlier challenges were finding funds for her surgeries. “We knew we couldn’t handle the expenses and wrote to many charities.”
Looking forward
“Judith is back to a normal life and is doing things by herself. We are praying that no more surgeries are required for her upper right leg, but even if there are, we’ve come three quarters of the way. She knows what to expect.”
Without the help of the charity, they wouldn’t have been able to start the surgeries, says Renuka. “Her legs are straight, she’s back into denim trousers and she loves it. We are taking her on a vacation in a few days.”
As for little Judith, she says, “2015 has been hard for me but 2016 will certainly be better. I’ve started walking now. I walk up the stairs too. I’m looking forward to Grade 9 and to the adventures and experiences I couldn’t enjoy before.
“Right now I’m not feeling any pain and I’m happy and feel confident.”
During her time spent at home healing from the surgeries, Judith composed many poems and on December 17, her book of poems was launched in Sri Lanka, informs Renuka. “Every child is blessed in a different way.”
