Bringing back a smile to their faces
She takes a few careful steps forward and lets out a happy squeal, as the onlookers cheer her on. Eleven-year-old Prabhani Vithanage is beaming. Before her, clad in a crisp white shirt and sarong, is her greatest supporter – Ganesh Velautham, founder of the Shivan Foundation for Disabled Children. Prabhani, like many of the children being treated at the foundation- is a victim of Cerebral Palsy and the few steps she takes symbolize a new beginning for her..
Ganesh Velautham with a young patient. Pix by Nilan Maligaspe
Nestled among the trees on a breathtaking 3000 ft hill range, 20 km off Kandy at Teldeniya, the Shivan Foundation aspires to bring hope into the lives of disabled children and their parents. The treatment and care is free, but what truly brings the patients to the Foundation is its family-like atmosphere and loving care.
The Foundation is the brainchild of 47-year-old Ganesh Velautham, a London-based Sri Lankan and has its own heart-rending story behind it. In 1995, Mr. Velautham’s son Shivan was born prematurely at 24 weeks. He weighed just 665 grams. The doctors in London wrote off little Shivan. “The doctors told me that he wouldn’t survive and asked if we were willing to pull the switch,” Mr. Velautham recalls. Shivan had already lost an eye due to an operation following the birth defect and his life was hanging in the balance, but Mr. Velautham would not give up.
Shivan miraculously survived, but cerebral palsy dispelled all hopes of an active life. Today Shivan is 17 and is studying at the Lindon School of Special Needs in London – he is blind, autistic and cannot move freely, but he is happy. “It was difficult to bring him up and it required a lot of dedication,” Mr. Velautham recalls. Children with cerebral palsy can be extremely stubborn, he says, which is why constant love and care is imperative. Mr. Velautham chose to take time off work and be with Shivan – this was when he realised the plight of a parent with a disabled child.
“My wife and I found it difficult to bring him up in London, I could only imagine how difficult it was for parents back in Sri Lanka,” says Mr. Velautham explaining why he chose to set up the Foundation in Kandy owing to its multi-ethnic culture and the cool climes, which would give him the opportunity of serving families from all ethnicities while the relaxing scenery would help the children.
Mr. Velautham is originally from Nelliadi, Jaffna. He moved to England and worked his way to stability, delivering pizza initially and when things went real bad, cleaning toilets to earn a living. Later, he set up his own clothing store and has now ventured into the real estate business. “I am not filthy rich, but I am well off and that is why I want to spend my money for a cause that is both worthy and close to my heart.”
The Foundation opened its doors in June this year. There are 22 paid staff including six therapists. The centre’s 15,000 sq. ft. building houses health, educational and leisure facilities such as classrooms, a hydrotherapy pool, music therapy room, an ayurveda centre and herbal massage room. Several acres of organic farmland and free-range animal enclosures provide the children the opportunity to interact with nature.
Presently there are over 70 children with disabilities caused by Cerebral Palsy and some who are autistic. Ten-year-old Gopani from Karaliyedda spent the first eight months of her life curled up into a ball. Later her posture improved slightly. Her father H. M. S. Bandara used to run a van for hire, but Gopani’s illness meant he had to dedicate all his time to her. “My priority is to see her become self-sufficient one day,” he tells us. “I have been at the Foundation for three months and the Gopani’s development has been phenomenal.” Today, she can comfortably seat herself in a chair and play with toys.
Sudam Jayasinghe from Ampitiya, father of three-year-old Akash was sent from pillar to post in search of treatment. ‘Hamathenama madey dama dama hodanawa witharai,’ Mr. Jayasinghe says that it was to no avail. The Botox injection used as a muscle relaxant would cost him Rs. 17,000 at the Digana Rehabilitation Hospital, and sometimes parents like him who had travelled far would be sent back without consultation after hours of waiting, he says.
Mr. Jayasinghe tells us that he was crushed mentally and economically until he finally came to the Foundation.
Nine-year-old Fathima Naura could not walk when she came two weeks ago, but today she is moving around happily. For some though, the improvement is gradual. Anula Kumarihami pushes her daughter’s wheelchair towards us and we see 16-year-old Isuri Navodya busy making shapes with her fingers. A tear rolls down Anula’s cheek as she speaks to us and there’s a reason behind it. “My husband was working at the Mahaweli Authority and we managed to bring Isuri up, but after his death I was left alone and everything changed,” she says. Anula herself has had five hernia operations. Isuri’s condition had gone from bad to worse but now she’s back on track after treatment at the Foundation.
Prabhani beams after taking a few steps on her own
The Foundation is registered as a charity, but Mr. Velautham states that this status is insufficient for expansion. “I have been applying for the Non-Governmental Organisation status for over a year, but I’m faced with stiff resistance,” he tells us. His ethnicity and the fact that he’s from Jaffna have been the cause of the roadblock in the eyes of the authorities, he feels. “It’s true that I left to England in the days of the riots and it is true that I’m from Jaffna, but why does that have to stop me from helping people out?” he asks.
Mr. Velautham explains that without the proper licences he would find it difficult to raise funds for the organization. But he remains determined to serve the disabled and has even moved full-time into overseeing the hospital with his partner taking care of business back in London. “I am in the country for nine months of the year, and I am giving my dream everything I have to offer.”
More information can be obtained from www.shivanfoundation.org
What is Cerebral Palsy?
Cerebral Palsy can occur when the child is in the womb, during birth or shortly thereafter, and is caused by a disruption of nerve signals between the brain and the muscles, affecting movement, posture, and coordination.
The incidence of children with cerebral palsy is 12 – 15 per 1000 births in Sri Lanka with an estimated 40,000 children being diagnosed. Cerebral Palsy is not curable but treatments such as occupational, speech and water therapy help make patients more active members within their family and community.
NGO status: Still pending
When contacted by the Sunday Times, Divisional Secretary of Medadumbara J. M. J. K Jayasundara said that he has reviewed the request to obtain Non-Governmental Organisation status and has given directives to the founder as to how he should proceed. “I have given my recommendation and passed it onto the Divisional Secretary. I have mentioned that the Departments of Health and Probation need to give in their recommendation too,” he stated. However it has been over a year, and where things will go from this stage is unclear.
Treatment based on cleansing the body
Treatment at the Shivan Foundation follows the Siddha Medicine of South India, and focuses on the Panchakarma methods of cleansing the body. “This is a method that is proven to rejuvenate nerve cells in the brain,” says Dr. Thavaraja Vijaykumar, who looks after the patients at the Foundation. Dr. Vijayakumar is a graduate in Siddha Medicine and Surgery from the Jaffna University and also holds a MSc in Hospital Management from the Sabaragamuwa University.
One of the techniques used is the practice of Shirodhara which involves pouring medicinal oil onto the forehead of the patients. “The oil works on the pressure point at the forehead which we call the third eye, and it brings much relief,” Dr. Vijayakumar explains. Other forms include keeping the patient in a herbal bath for a certain number of hours and thorough massaging to loosen the muscles.
Although the treatments have brought results, the full effects of cerebral palsy cannot be reversed and the best they can hope for is the achievement of self-sufficiency for a patient, Dr. Vijayakumar says.
comments powered by Disqus