Fighting IFAP Syndrome with love and Capoeira

Sickboy

CBC

Society & Culture

4.8 • 524 Ratings

🗓️ 27 June 2021

⏱️ 55 minutes

🔗️ Recording | iTunes | RSS

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Summary

Sapo and Lorena are the loving parents of little Nauê. Nauê was born with Ichthyosis follicularis, alopecia, and photophobia AKA IFAP syndrome. An extremely rare condition with a shortened life expectancy. Caring for a chronically ill child can be draining. But Sapo and Lorena have found a way of coping with the stress and connecting to their roots. Capoeira, a playful mix of martial arts and dance from their homeland, which they have immersed their son into to encourage play, love and courage.

Transcript

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0:00.0	Hi, Steve Patterson here, host of the debaters, the show where Canada's best comics battle it out.
0:05.2	This week, we're asking if silence is golden, which is quite the question for two comedians.
0:09.6	And this goes without saying. Listen wherever you get your podcasts.
0:15.1	This is a CBC podcast. Welcome to Sick Boy, a podcast where we talk about what it's like to be sick. This
0:22.2	week's guests are Sappo and Lorena. They're the parents of Nalway, a toddler who lives with
0:27.6	IFAP syndrome. Let's talk about it.
0:34.0	Um, well, we are sitting down with just the most lovely couple.
0:44.4	I hope it's okay that I say that.
0:46.5	Sapo and Lorena, all the way from Toronto.
0:50.1	But I guess before we get into it, before we get into the discussion about your lives and
0:55.4	what you've been through over the last couple of years, why don't you give our listeners
1:00.4	a little introduction into who the two of you are, where you're from, and what you do for a
1:06.7	living.
1:09.6	My name is Lorena.
1:11.7	I am from Brazil.
1:13.9	However, I've been living in this beautiful country, Canada, for 20 years.
1:19.4	So I'll say half of my life.
1:22.6	And at the moment, I'm just a full-time mom.
1:28.4	Yes. Full-time indeed. Yes just a full-time mom. Yes.
1:29.3	Full-time indeed.
1:30.5	Yes, very full-time.
1:32.2	As full-time as can be.
	...

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