An extraordinary fight for an ordinary life

Christopher Toi is a quintessential eight-year-old - boundless energy, a penchant for mischief, and a dislike of homework and vegetables. The routines of Primary 2, Chinese enrichment classes, music lessons, and zooming around on his bicycle give his life a familiar rhythm.

But he'll brazenly inform you that he's "special". Because Google said so.

"It's from the headline of a column I wrote when he turned one," laughs his journalist mother, Amelia Teng. "He did a search of his name and found it. Now he thinks he's more special than everyone else."

That, he is. Christopher suffers from bile acid synthesis disorder, a genetic condition so rare, he is the only reported case in Singapore, and one of fewer than 50 worldwide. Normal livers can make cholic acid to break down fat, but his does not, putting him at risk of liver failure.

His extraordinarily ordinary life is possible because of the Rare Disease Fund (RDF). Set up by the Ministry of Health and SingHealth Fund in 2019, it puts the lifesaving medication he will need all his life within reach. The daily doses of cholic acid cost $8,000 a month now, and as he gets older and heavier, that dose - and the accompanying bill - will go up, exponentially.

The government matches every dollar donated to the RDF with $3, amplifying the impact of contributions. To catalyse awareness around rare diseases and funding for the RDF, the Balaji Sadasivan Endowment, managed by Temasek Foundation, along with Temasek and its staff volunteer initiative T-Touch, became some of its earliest donors.

Because rare diseases are, by their very nature, unseen, the hope was to draw attention - and help - to where it was desperately needed.

"Families of children with rare diseases face a long and difficult journey of diagnosis and treatment. The Rare Disease Fund provides them with the resources and care they need. More importantly, it brings hope. We hope that more people will join us in supporting those who really need it," says Mr Kirk Kee Chuen, Head of Health & Well-being, Temasek Foundation.

As of the end of last year, the RDF supported treatment for Christopher and eight other beneficiaries with rare genetic diseases.

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