SPINA BIFIDA WARRIORS SHOWCASE THEIR TALENTS

Malaysian virtual event marks World Spina Bifida and Hydrocephalus Day 2021

World Spina Bifida and Hydrocephalus Day (WSBHD), celebrated annually on 25 October, was established by the International Federation of Spina Bifida and Hydrocephalus (IF) in 2011 with the aim of raising awareness and understanding of Spina Bifida and Hydrocephalus (SBH) as well as advocate and promote the rights of persons with these conditions. 

Spina Bifida Association of Malaysia (SIBIAM), with the support of the District Action Group for Spina Bifida and Hydrocephalus (DASH), celebrated WSBHD 2021 via a virtual local event recently with guest of honour Dato’ Yasmin Yusuff, celebrity radio personality, artiste and former Miss Malaysia Universe.

Yasmin shared her personal connection with individuals with disabilities. “Causes for children with special needs have always been very close to my heart,” she said.

“A cerebral palsy child was my little American host when I was a foreign exchange student many years ago in California. We bonded over the fact that we were both left-handed – he because his right side was affected. I also had a school friend who had spina bifida, but was unaware of her struggles back then.

“It has been eye-opening to learn about spina bifida and hydrocephalus, especially the visible as well as the invisible disabilities associated with the condition. Thank you for being an advocate for all who are present today,” said Yasmin, before launching the WSBHD 2021 celebration. 

The highlight of the event was a talent competition titled “Celebrate Abilities with Diversity” which showcased the wide range of talents within the Malaysian SBH community. Winners from each category (6-12 years old, 13-17 years old and over 18 years old) were decided through a voting process based on Facebook “likes”. Winners were surprised with a unique immersive view experience via Zoom, where they had virtual photographs taken live with Yasmin.

Nur Airish Hani Binti Roszaidi, 10, clinched the first prize of RM500 for her category with a drawing of the Malaysian National Monument alongside the spina bifida ribbon. Meanwhile, Form 4 student Jonathan Lee Jing Yik came out victorious among the teens with his rendition of the popular Chinese song “朋友” (Friends) by Emil Chau. Audio engineer Kenneth D’Cruz, 33, wowed his way to the top of the over 18 years old category with a heartfelt cover of Rascal Flatt’s “Bless The Broken Road”, for which he also played backing keyboard.

The SBH community consists of many talented people and a wonderful support network that strives to achieve the best quality of life for all. The commitment to recognise their strengths and ensure accessibility to resources require a collective effort. “The support needs to come from top down and vice versa, with greater attention from policy makers to honour the UN Convention of the Rights of Persons with Disability,” said Yasmin.

Professor Dr Amaramalar Selvi Naicker-Naysaduray, president of SIBIAM elaborates, “Individuals with spina bifida need a holistic management; not just from the hospital, but family and friends, policies that support their needs and accessibility, opportunities for education and jobs, and non-governmental organisations that can focus on their cause.

“With families, healthcare workers and SIBIAM working together, it is very likely they will have a good quality of life.”

In 2018, DASH was set up as a special action group within Rotary District 3300 and has been instrumental in advancing SIBIAM’s cause.

Dr Kribanandan GN, chairperson of DASH, explains, “We wanted to bring together likeminded Rotarians to assist SBH individuals through awareness campaigns leveraging on 2 critical factors: SIBIAM’s excellent network of doctors and practitioners and the strong structure of clubs within the Rotary Movement.” 

ABOUT SIBIAM & DASH 

SIBIAM was incorporated in 2007, focusing on awareness campaigns to empower parents with knowledge about spina bifida and hydrocephalus. They soon discovered there was also a need for the community and healthcare providers in less connected areas to understand and help individuals with SBH. 

The words “congenital condition” usually come with grim undertones of disabilities and a poor quality of life. Spina bifida, however, actually results in a spectrum of diverse outcomes and abilities.

Spina bifida affects 0.11-1.87 per 1,000 live births in Malaysia. It causes malformation of the spine and spinal cord, which can lead to multiple medical complications such as hydrocephalus, varying degrees of paralysis, bowel and bladder incontinence, musculoskeletal issues and pressure sores.

Although doctors can prognosticate the walking ability of an individual with spina bifida based on the level of the spinal cord that is affected, it is not as easy to predict the associated medical complications. Therefore, it is difficult to label any child with spina bifida with a certain degree of disability because their limitations are a combination of factors. 

DASH has linked up with SIBIAM for various projects, most notably securing the Rotary Foundation Global Grant 2020 for the “Training Health Care Professionals and Special Needs Teachers on the Management of Spina Bifida” programme, which will be implemented over the next two years. 

If you would like to know more about SIBIAM (www.sibiam.my) or DASH (www.facebook.com/DASH3300) and find out how you can be part of the SBH community, do contact them at the details listed on their websites.