A Letter to Myself Podcast: Father of a child with rare disease - The pain and worry has been ‘all worth it’
With a child who has a rare disease and needs expensive medication every day, father Geoffrey Toi tells Joel Chua why taking things one day at a time is the best way to cope.
Be inspired by the person behind the personality on "A Letter to Myself", as newsmakers, thought leaders, and everyday people reveal the most valuable lessons they've learned through life.
This audio is generated by an AI tool.
When a pin prick to draw blood for their newborn son didn’t stop bleeding for 36 hours, parents Geoffrey Toi and Amelia Teng knew something was very wrong with their child. At six months old, Christopher was diagnosed with Bile Acid Synthesis Disorder – and he is the only patient in Singapore with this rare disease.
Today, the precocious 8-year-old needs daily medication, and at first glance, still behaves like any other child.
In this episode, Geoffrey tells Joel Chua how his family's hard-fought journey to secure lifelong support for Christopher has been greatly helped by the Rare Disease Fund and looking back at his journey so far, how taking it "one step at a time" is the best approach.
On hearing how rare the disease was:
“The typical questions come right? Why us? Why him? But we do attend church so that was what we clung to, helped us get through and process it. Our family, friends, church rallied around us.’’
The cost after the diagnosis:
“(They told us) it’s going to cost you S$20,000 a month. You are new parents with a six-month old baby, who are already trying our level best ... and now you tell us this medication is going to cost (so much). We were floored.”
On how 8-year-old Christopher copes:
"He tried to search for himself on Google and found the article (on our story) and his conclusion was that he was a really special boy
It was bittersweet (hearing that). It is sweet that he feels he is special, which he is. But bitter that behind this specialness it’s not all roses.
On his wish for his son:
As much as we are trying to handle all the logistics and the administration (of managing his disease), we want to make sure that the kids grow up to be good people.
So what if he can swim or play the piano or do math? More important is that he becomes a good person because that will influence what he does for society.
(This interview was first broadcast on 14 November 2024.)
Listen to Geoffrey's story on A Letter to Myself. This podcast, hosted by Joel Chua, features people with remarkable life lessons to share and airs every weeknight on CNA938.
If you know someone with an inspiring story, write to cnapodcasts [at] mediacorp.com.sg.
Follow A Letter to Myself on Apple Podcasts or Spotify.
