‘We Are Here’

Launching Boccia at the National Centre for Children with Cerebral Palsy and other developmental disorders

• Celebrating World Cerebral Palsy Day with NCCCPDD

By Aysha Maryam Cassim

The National Centre for Cerebral Palsy and Developmental Disorders is a joint venture by MJF Charitable Foundation and Cerebral Palsy Cerebral Palsy Lanka Foundation. The Centre serves as a hub in facilitating individual rehabilitation and social integration that gives children and youth with Cerebral Palsy, Down syndrome and Autism the chance to lead a fulfilling and dignified life. 

World Cerebral Palsy Day is about acceptance, awareness and understanding of one of the most common global developmental disorders. This year’s theme ‘We Are Here’ encourages individuals around the world with CP to collaborate and share resources, knowledge and also to remind the global community that they are here and just as much a part of the community. 

In order to serve people with CP in cause, diagnosis and treatment, it’s important that researchers, physicians, therapists nurses, specialists, carers and families have the best information and tools. In Sri Lanka, there is no formal record of the total number of individuals born with CP and there exists a critical need for research and a medical and therapeutic element of change. 

“The estimated number of children and adults with CP in Sri Lanka is 40,000. Athetoid type of CP is very common in developing countries like Sri Lanka. Most of the existing data related to CP come from developed countries and very little research has been done in the Sri Lankan context. We need further research and breakthroughs to find out the prevalence, type and causes of CP within the local community. We are working on a national register for CP in Sri Lanka which will enable us to understand the causes and remedial action possible,” Cerebral Palsy Lanka Founder and NCCCPDD Director Gopi Kitnasamy stated.

NCCCPDD in partnership with Durdans Hospital launched a Hip Surveillance Initiative for children with CP for the first time in Sri Lanka

On 6 October, in celebration of the World Cerebral Palsy (CP) day, NCCCPDD in partnership with Durdans Hospital launched a Hip Surveillance Initiative for children with CP for the first time in Sri Lanka. Hip surveillance is the process of monitoring and identifying the critical early indicators of hip displacement or hip dysphagia. Through this initiative, it will be possible to X-ray up to 100 children from the MJF Centres across Sri Lanka and others, benefiting children with and at risk for cerebral palsy and other childhood-onset disabilities.

On the same day, NCCCPDD was introduced as a training ground for Boccia for CP – a game of strategy and accuracy which was introduced as a competitive sport in the Paralympics. Boccia is one of the few sports that people with CP can play. It is also a therapy itself as it improves a person’s motor skills and hand and eye coordination – enabling children with CP to participate and contribute to society through the provision of appropriate sport and recreational activities. 

The National Centre for Children with Cerebral Palsy and other Developmental Disorders (NCCCPDD) and the MJF Foundation strive to improve the lives of individuals and families with CP through special education, training, awareness and outreach programs for the general public as well as caregivers, educators and professionals who want to update their knowledge on CP. 

Together with Cerebral Palsy Lanka Foundation and Wheels for Wheels Foundation, The MJF Charitable Foundation has been organising wheelchair campaigns, covering more than 30 destinations across the island. Over 2,200 wheelchairs have been donated so far. NCCCPDD has been working with World Vision on training midwives across Sri Lanka. 

The Early Intervention Group in MJF Centre, Moratuwa has established links to the local area midwives and MoH to encourage early detection and improve the quality of life for the child and family with CP. The MJF Centre for Dignified Empowerment and Sustainable Development which was recently inaugurated in Kalkudah will support children with disabilities to achieve their fullest potential with the state-of-the-art facilities – better equipped to meet their needs.

World CP Day calls for the need to advance knowledge, advocacy and research on one of the most complex and common disabilities in the world. It is not just a day but a movement that recognises the urgency of delivering skills and resources to ensuring that children with CP become contributing members of society and supporting the families who are their caregivers. 

Dilmah’s philanthropic arm MJF Charitable Foundation continues to support the local CP community by creating a powerful voice on behalf of them to change their world. It is only together that we can make this change a reality. 

From right: Malik J Fernando, Ajith Tudawe, Rakshitha Tudawe and Upul Tudawe at the launch of Hip Surveillance Initiative for children with CP