249239 - Reversion Of 247330 The Sisters Who Can't Go Out In The Sunlight YouTube - video Dailymotion

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00:00Ami and Taya have been diagnosed with xeroderma pigmentosum.

00:04They're 10,000 times more likely to get skin cancer than uroite

00:08and they're 2,000 times more likely to get other cancers

00:11because their cells just don't repair at a DNA level.

00:15It's a very rare condition.

00:16Okay, go on, it's safe.

00:29So when Ami was really young, that's when she had her first burn

00:32at about three and a half months old.

00:33She didn't settle in the afternoon and by that evening

00:37her whole face had puffed up and then it was swollen red.

00:41So we went to emergency.

00:43They had no idea, didn't really give us any indication of what it could be.

00:48When we finally had the bad burn at the end of last year,

00:53Ami's face was red and puffy and it would have been two days at school

00:58that that burn happened over, you know, only going outside during lunch and recess.

01:04And when we got referred to a dermatologist who quite quickly said that it was XP,

01:10there was a hope that there was an answer but it was also incredibly confronting

01:16because it's not the answer that you want it to be.

01:18After Ami was diagnosed from the genetic testing, we then,

01:22Yvette and I and Teo were tested and yes, it confirmed that she had XP, same as Ami did.

01:32So it's called XPD.

01:34In essence, their body can't repair the damage

01:38at a DNA level when their skin is exposed to UV light.

01:42So here we've got the UV meter which measures very small amounts of UVA and UVB

01:50and so when you point it up to the sky, you can see it climbing quite quickly.

01:55So we use this as a very handy tool for places that we don't know whether they're safe or not

02:02and Ami finds it quite reassuring to be able to check.

02:06It's a bit sad though that my sisters can't join me because it's all they can

02:12but it's hard for them to go out for long periods of time.

02:17Hands please, chookaboot, there it is.

02:19She takes about 10 to 15 minutes to get them sort of creamed up properly

02:23and then put zinc on her lips so that's just an extra protection for her lips.

02:29And then the final one is their special hood when they go outside and their UV gloves.

02:34So every bit of skin is completely covered, there's no way that UV can get to them.

02:42One of the first things we did once we got the diagnosis was to make our home safe.

02:46So we got all the windows in our house tinted, every single pane of glass.

02:51They're 10,000 times more likely to get skin cancer than urite

02:55and they're 2,000 times more likely to get other cancers

02:58because their cells just don't repair at a DNA level.

03:08When I first put it on I was scared but then I got used to it each day

03:14and I stayed inside and then when lockdown happened I started going outside because

03:21there was less people so I wouldn't be as embarrassed with everyone in front of me

03:26and then I was so used to it when everyone came back.

03:29So my skin doesn't feel as sore if I protect it and it hurts when it burns

03:36so at least we've found something to fix that and it won't happen anymore.

03:41We needed to be 10 or under for the girls to take their gear off

03:45and we're still up in the hundreds.

03:48She feels sad when they can't be involved in social situations

03:52or just pop down to the beach quickly for a quick swim.

03:55You know it's not a pop down for us, it takes quite a bit of preparation to get out of the door.

03:59So we're at 50 at the moment, still a bit high so I have to wait a bit longer until it's safe.

04:06We can get the girls to take their hoods off and gloves and they can go running around, be free.

04:10So nearly there.

04:18Okay everyone, it's safe?

04:20Yeah!

04:22Hoods off!

04:24Get it off! I'm free!

04:30We get to take off our gear!

04:33When you see the girls playing together at sunset without the gear on it's just, it's priceless.

04:37It's also bittersweet that you know you just wish that they could be like that during the day

04:41but they just can't be.

04:42Our hopes and dreams for them are that they continue with the attitude they have at the moment

04:47that they're not going to let this stop them

04:51and for Nick and I to keep trying to support them in that way as well.

04:55Yeah I just want them to have as a normal life as possible really

04:58whether they have to wear a hood and gloves or not you know so be it

05:02but to not let their condition hold them back and stop them from doing things they want to do

05:06and to achieve the dreams and desires and hopes that they want to achieve in life.

249239 - Reversion Of 247330 The Sisters Who Can't Go Out In The Sunlight YouTube

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