SISTERS Amielle, 8, and Taya, 3 from Sydney, Australia both have Xeroderma Pigmentosum, a very rare condition that means if the girls are exposed to sunlight their skin can be burnt very badly. Their parents Nick and Yvette explained to Truly how serious the condition is: “They’re 10,000 times more likely to get skin cancer than you or I and they’re 2000 times more likely to get other cancers as their cells don’t repair at a DNA level.” Amielle’s first burn happened when she was just three and a half months old, initially doctors said that she just had sensitive skin and it wasn’t until Amielle was 7 that she was finally diagnosed with XP. After the diagnosis the family took a DNA test and discovered that Taya also has the rare condition. The girl’s parents, Nick and Yvette have to take a number of safety measures when the sisters go outside. To ensure they are not exposed to any UV light at all the girls have to wear a thick layer of sunblock, gloves and a protective visor before leaving the house. This sometimes makes socialising tricky for Amielle and Taya. Yvette told Truly: “It makes you feel sad when they can’t be involved in social situations or just pop down to the beach for a quick swim. It’s not just a pop down for us, it takes quite a bit of preparation to get out of the door.” Nick and Yvette hope to raise money via GoFundMe to build a covered play area in their garden so the girls can have fun outside freely. Due to their condition Amielle and Taya can only visit the beach at night to be completely safe. Truly visited the family during one of their evening trips to their local beach to see the sisters enjoy the seaside together. Nick explained how important these trips to the beach are for the family: “When you see the girls playing together at sunset without the gear on it’s priceless.”
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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]