Child with rare spastic quadriplegia needs support

Siblings with rare spastic quadriplegia smile through their pain Despite all apparent complications that come with a life with spastic quadriplegia cerebral palsy, like any sibling duo, brothers Stephen, 8, and Ashwin, 6, are extremely attached to each other. If you give Stephen a high-five, you have to extend your other arm to give Ashwin one, too. With a mischievous smile and a twinkle in his eye, Aswhin lifts his hand as Stephen nudges him to shake hands with visitors to their home in Al Khail Gate, Al Qouz. “Ashwin is the naughty one. He troubles everyone in his school as well. But they love each other’s company,” says their mother, Jenny Gunaratnam, a Sri Lankan. Stephen and Ashwin pose for a photograph at their home at Al Khail Gate.  Students of the Rashid Pediatric Therapy Centre, the boys have been attending the school for physiological and occupational therapies that treat their rare condition of spastic quadriplegia. “They are happy, friendly children and like all brothers at this age, they are thick as thieves. Stephen was born in the UAE and I delivered Ashwin in Colombo,” says Jenny. “Their deformity is the most severe form of cerebral palsy in which all four limbs and the trunk are greatly affected and include learning difficulties,” says their father Gunaratnam Thangavelu. In May 2013, Stephen was diagnosed with a left hip dislocation. According to a report from the boys’ pediatric orthopedic surgeon, Dr Marc Sinclair, from the Children’s Medical Centre, though initial diagnosis did not suggest any long-lasting damage, the recent X-rays show a complete dislocation of his left hip bone. Since Stephen is able to walk with minimal assistance for short distances, Dr Sinclair recommends that a hip reconstruction surgery is necessary at this point. He is in need of surgical treatment to both proximal femurs (thigh bone) and tendon lengthening. “Stephen will be in a spica cast for six weeks following the procedure (to) avoid further deformities such as pelvic obliquity and developing spinal scoliosis. We didn’t do anything about the treatment for an entire year, but now I think we must treat it. The problem is that the surgery itself is very expensive,” says Jenny. Gunaratnam works as an accountant in a firm in Dubai, and though a lot of help is provided by well-wishers in raising the children, he has to work really hard to make ends meet. “I cannot work and take care of the kids at the same time. They return from school at 2.30pm and they require constant attention,” says Jenny. After a discount provided by the hospital, the total cost of the treatment is about Dh128,145. The boys’ parents are desperately looking to raise funds for Stephen’s surgery. “Stephen cannot speak and his only way of expressing discomfort of pain is by pointing to the area where it hurts,” says Jenny. Apart from the hip dislocation, Stephen also suffers from a chronic skin disease and has eczema along the skin folds of the joints, which need to be constantly treated with topical application of creams and lotions. Email at : dhanusha@khaleejtimes.com  Source : Khaleej Times , 1st April 2014