00:00 (child crying)
00:02 - Her first burn happened when she was
00:04 about three and a half months old.
00:06 We were told that she just has sensitive skin
00:08 and never sat right with me.
00:10 - Hands please, Chukaboot.
00:12 - Ami and Taya have been diagnosed
00:14 with xeroderma pigmentosum.
00:16 - They're 10,000 times more likely to get skin cancer
00:19 than urethrite, and they're 2,000 times more likely
00:22 to get other cancers because the cells
00:25 just don't repair at that DNA level.
00:27 It's a very rare condition.
00:29 - You guys want to sleep?
00:30 - Yeah, baby!
00:31 (children screaming)
00:33 - I'm free!
00:33 We get to take off again.
00:37 - Could I please have an almond latte?
00:41 - So when Ami was really young,
00:42 that's when she had her first burn
00:44 at about three and a half months old.
00:46 She didn't settle in the afternoon,
00:48 and by that evening, her whole face had puffed up,
00:52 and then it was swollen red.
00:54 So we went to emergency.
00:55 They had no idea, didn't really give us
00:58 any indication of what it could be.
01:00 And when we finally had the bad burn at the end of last year,
01:05 Ami's face was red and puffy,
01:07 and it would have been two days at school
01:10 that that burn happened over,
01:12 only going outside during lunch and recess.
01:15 And when we got referred to a dermatologist
01:19 who quite quickly said that it was XP,
01:22 there was a hope that there was an answer,
01:25 but it was also incredibly confronting
01:28 because it's not the answer that you want it to be.
01:31 - After Ami was diagnosed from the genetic testing,
01:34 we then, Yvette and I and Tayo were tested,
01:37 and yes, it confirmed that she had XP,
01:39 same as Ami did.
01:41 - Thank you.
01:42 - It has salt on it.
01:43 - You do not have salt!
01:45 - So it's called XPD.
01:47 In essence, their body can't repair the damage
01:51 at a DNA level when their skin is exposed to UV light.
01:55 So here we've got the UV meter,
01:57 which measures very small amounts of UVA and UVB.
02:02 And so when you point it up to the sky,
02:05 you can see it climbing quite quickly.
02:08 So we use this as a very handy tool
02:11 for places that we don't know whether they're safe or not,
02:14 and Ami finds it quite reassuring to be able to check.
02:18 - It's a bit sad that my sisters can't join me
02:21 because, well, they can,
02:24 but it's hard for them to go out for long periods of time.
02:28 - Good.
02:29 - Of course they can.
02:29 - Hands, please, Chikaboot.
02:31 There it is.
02:32 It takes about 10 to 15 minutes
02:34 to get them sort of creamed up properly.
02:36 And then with zinc on her lips.
02:39 So that's just an extra protection for her lips.
02:42 And then the final one is their special hood
02:44 when they go outside and the UV gloves.
02:46 So every bit of skin is completely covered.
02:48 There's nowhere that UV can get to them.
02:51 - We did it!
02:53 - One of the first things we did
02:55 once we got the diagnosis was to make our home safe.
02:58 So we got all the windows in our house tinted,
03:01 every single pane of glass.
03:03 We're 10,000 times more likely to get skin cancer
03:06 than URI, and we're 2,000 times more likely
03:09 to get other cancers because the cells
03:12 just don't repair at our DNA level.
03:14 (wind blowing)
03:17 - Go, let's go to the beach.
03:18 - Go to the beach, beach, beach.
03:21 - When I first put it on, I was scared,
03:24 but then I got used to it each day.
03:27 And I stayed inside.
03:29 And then when lockdown happened,
03:31 I started going outside 'cause there was less people.
03:34 So I wouldn't be as embarrassed
03:36 with everyone in front of me.
03:38 And then I was so used to it when everyone came back.
03:41 So my skin doesn't feel as sore if I protect it.
03:46 And it hurts when it burns.
03:48 So at least we found something to fix it.
03:51 It won't happen anymore.
03:53 - We needed to be 10 or under
03:55 for the girls to take their gear off.
03:58 We're still up in the hundreds.
04:00 - She feels sad when they can't be involved
04:04 in social situations or just pop down
04:07 to the beach quickly for a quick swim.
04:10 You know, it's not a pop down for us.
04:11 It takes quite a bit of preparation to get out of the door.
04:14 - So we're at 50 at the moment.
04:16 Still a bit high.
04:17 So we have to wait a bit longer until it's safe.
04:21 Get the girls' heather hoods off and gloves
04:22 and they can go running around, be free.
04:25 Nearly there.
04:27 Okay, everyone, it's safe.
04:32 - Yeah, baby!
04:34 (screams)
04:35 - Hoods off.
04:36 - Get it off.
04:37 I'm free.
04:39 (screams)
04:41 - We get to take off our gear.
04:45 - When you see the girls playing together at sunset
04:47 without the gear on, it's just, it's priceless.
04:49 It's also bittersweet that, you know,
04:51 you just wish that they could be like that during the day,
04:54 but they just can't be.
04:55 - Our hopes and dreams for them are that they continue
04:58 with the attitude they have at the moment,
05:00 that they're not going to let this stop them.
05:03 And for Nick and I to keep trying to support them
05:06 in that way as well.
05:07 - Yeah, I just want them to have as a normal life
05:09 as possible, really.
05:10 Whether they have to wear a hood and gloves or not,
05:13 you know, so be it.
05:14 But to not let their condition hold them back
05:16 and stop them from doing things they want to do
05:19 and to achieve the dreams and desires
05:21 and hopes that they want to achieve in life.
05:23 (upbeat music)
05:25 (music)
05:27 [Music]
Comments