Life, Unexpected: When A Child Has A "One In The World" Genetic Condition - Part 1/4 | Full Episode

Episode 1 introduces families navigating some of the most difficult realities of paediatric palliative care. We meet nine-year-old Irfan, whose parents recount his journey from a healthy, bubbly infant to a child living with a rare genetic disease that has left him non-verbal and dependent on round-the-clock tube feeding. The episode also follows Rae and Ryan, parents to 21-year-old Rachael, who has lived with a rare chromosome disorder since birth. As Rachael’s condition deteriorates, they face an agonising decision — whether to continue life-sustaining measures or allow her life to come to a natural close. Through these families, the episode explores love, loss, and the weight of choices no parent ever expects to make.

WATCH MORE Life, Unexpected:    • Life, Unexpected | Full Episodes  

00:00 Introduction
02:22 Doctor visits Irfan at home
05:34 Discovering Irfan's condition
12:51 Star PALS' first patient
16:28 Remembering Edwin Chew
18:26 A "one in the world" genetic condition
23:17 Travelling the world with Rachael
25:59 Things take a turn for the worse
27:46 Making a difficult decision
32:05 Music therapy for Rachael
35:49 Irfan's music therapy
40:06 Rachael returns home
41:45 To "Allow Natural Death"
45:01 In the next episode

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About The Show:
Life, Unexpected Season 2 offers an intimate look at paediatric palliative care, following families and care providers as they face illness, difficult decisions, and life’s uncertainties.
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