Help at hand from people with similar experiences
PARENTS like Madam Lee are not alone.
They can seek support and help through Rare Disorders Society (Singapore) (RDSS), a non-profit organisation that aims to raise awareness about various rare disorders.
There are about 6,000 to 8,000 known rare diseases worldwide - including Williams syndrome, Maple syrup urine disease and Pompe disease - but the number of sufferers here is not known.
RDSS was set up in 2011 by Mr Kenneth Mah, 44, and his wife Patricia Ng, 40.
Mr Mah, vice-president of the group and a stay-home husband, said that they started it a year after their daughter Chloe was diagnosed with Pompe disease - an inherited neuromuscular disorder that causes progressive muscle weakness - when she was seven months old.
Chloe is now four years old. She cannot walk, cannot swallow food, and cannot speak.
Mr Mah told MyPaper: "The first question most parents would have is 'why me?' A lot of them feel that they are walking this journey alone, so we hope to create a network where parents can exchange knowledge and encourage each other."
There are currently 36 families in the society, and it has 20 active volunteers - including Mr Mah and his wife, a manager in the financial sector.
RDSS will be co-organising a public symposium tomorrow with Club Rainbow to raise awareness of rare disorders. Club Rainbow is a charity that helps children and young people with chronic illnesses.
The symposium - held in conjunction with Rare Disease Day today - will be held at Furama City Centre Hotel Ballroom I and II, 2pm to 6pm. Visit www.clubrainbow.org for more information.