Introduction

In a heartfelt episode of the podcast "A Letter to Myself," Geoffrey Toi opened up about the challenges and triumphs of parenting his son, Christopher, who was diagnosed with a rare Bile Acid Synthesis Disorder just six months after birth. What began as a terrifying moment—a simple blood draw that wouldn’t stop bleeding for 36 hours—transformed into a journey filled with resilience and unwavering familial support.

Christopher's Daily Routine

Now an energetic 8-year-old, Christopher's daily routine revolves around expensive medication—costing approximately S$20,000 each month—as well as therapies to manage his unique condition. Geoffrey, reflecting on their ordeal with host Joel Chua, emphasized the importance of taking life "one step at a time." “It can feel overwhelming,” Geoffrey explained, “but focusing on the present allows us to cope better.”

Initial Struggles and Support

When faced with their son’s rare diagnosis, Geoffrey and his wife, Amelia Teng, grappled with the enormity of the situation. “Why us? Why him?” were questions that haunted them initially. However, with faith and the support of their church community, they found strength. "Our family and friends rallied around us," Geoffrey said, recalling how their support system helped them navigate these turbulent waters.

Financial Burden and Support

Despite the heavy financial burden, Geoffrey highlighted the incredible role of the Rare Disease Fund, which has been crucial in their journey toward securing essential medical support for Christopher. “When we first heard the costs of his medication, we were floored. We were just new parents trying to do our best,” he recalled.

Christopher's Perspective

What about Christopher himself? Geoffrey shared a touching moment when Christopher, curious about his unique condition, looked himself up online. “He found a news article about us and concluded that he is a really special boy,” Geoffrey said with both pride and sadness. “It’s sweet that he feels special, but bitter too, knowing the struggles behind that specialness.”

Wishes for the Future

As they continue to tackle the logistics of his care, Geoffrey's greatest wish for Christopher transcends academics or hobbies. “What we wish for him more than anything is to grow up to be a good person. Skills like swimming or math are nice, but his character will greatly influence what he contributes to society.”

Conclusion

The family's unwavering optimism and dedication serve as a powerful reminder of the strength within familial bonds, especially in the face of daunting challenges. Tune in to hear Geoffrey Toi’s full story on "A Letter to Myself," a podcast that brings to light remarkable life lessons from those experiencing extraordinary challenges, each airing weeknights on CNA938.

This episode is a testament not only to love and perseverance but also to the often-unseen struggles faced by families navigating rare diseases. If you know someone with an inspiring story, the podcast team invites you to share it.