A BATTLE unfolded on a giant nine-by-nine-metre chessboard last weekend but instead of chess pieces, the players were children, adults, caregivers and volunteers from the Spinal Muscular Atrophy (SMA) community.
The human chess match called “Checkmate SMA” at the PARC (Project A Reka Cipta) community centre in Subang Jaya, Selangor, drew more than 200 participants.
The event, in conjunction with SMA Awareness Month and the eighth anniversary of non-profit organisation Spinal Muscular Atrophy Malaysia (SMAM), is now being considered for recognition by the Malaysia Book of Records as the country’s largest life-sized human chess match.
According to SMAM assistant secretary Miza Marsya Roslan, a 27-year-old Type 2 SMA patient, the chess match is meant to symbolise the daily life of someone who lives with SMA.
“Every time a chess piece is moved, it is part of a strategy.
“That’s pretty much how we live our lives, as everything we do needs to be planned,” explained Miza who is also a board member of Malaysia Rare Disorders Society.
She added that the need for constant planning went beyond daily routines, into education and careers where the SMA community required better accessibility.
“Most of us aren’t even allowed to go to school, as some schools don’t have the proper infrastructure to support us.
“And, even when we do have multiple degrees, it doesn’t guarantee us a job,” she added.
However, Miza points out that these systemic obstacles had never stopped the SMA community from having aspirations.
This is the case for Siti Hawa Apandi, 37, who played the role of a chess pawn.
First diagnosed with SMA at age two, she has just completed her PhD studies in computer science and aspires to be a lecturer.
“I’m glad this event is taking place as it really helps to spread public awareness for rare diseases such as SMA.
“This will help because some still believe that people with SMA cannot do what others can.
“In reality, for most of us, our cognitive abilities are totally unaffected,” Siti Hawa said.
The human chess game was led by Senator Isaiah Jacob, with Malaysians with SMA from all over the country taking part.
The white chess pieces were played by the SMA patients, some were assisted by caregivers and family members.
The black chess pieces were played by SMAM volunteers and stakeholders including doctors, genetic counsellors and pharmacy industry representatives.
Each move was directed by two players who were at the side of the board.
Whenever a player made a winning move, the crowd cheered.
The event included an exhibition featuring people living with SMA, a networking lunch and a panel discussion themed “Life After Treatment — Hopes, Realities and Roadmaps”.
During the welcoming address, SMAM vice-president Arfah Jamian said SMA affected one in about every 10,000 births globally.
“SMA is a rare genetic condition that affects motor neurons and causes progressive muscle weakness due to a deletion or mutation in the SMN1 gene, which reduces survival motor neuron protein levels.
“We want to raise the importance of its awareness because we need stronger collaborations to address challenges faced by SMA families.
“This human chess match shows that every step, no matter how small, can bring strength, courage and resilience in the face of SMA,” Arfah added.
The game was officially launched by Health Ministry medical development division (medical care quality section) deputy director Dr Azlihanis Abdul Hadi.
“I hope today’s event is not only about celebration but will be followed up with concrete action.
“This includes gathering information, building trust and strengthening responsibility so that programmes like this can continue,” said Dr Azlihanis.
