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  • painful, Horrible.

  • Got any limit?

  • Sent me a text wish.

  • Has a tech because he had enough for the past is a very complex condition And again we didn't know where long he would be With also long he will be with us I'm alright people being there It's just when they walk past a niche Keep stirring sometimes I should with a moving back because I was so as you will so, Panfilo.

  • Every day 24 7 pain a Sooners had given birth.

  • They could tell there was something wrong.

  • E I have no skin on his feet tile It was just flat.

  • These house recessive dis traffic general life severe The necessities from both of the parents effects him wheeler under internally as well gets moved blisters in these fraught export cause up.

  • I'm just swallowing tongue fuse to the bottom of his may.

  • Obviously, all these fingers and tall suffused.

  • So yeah, internal is worse because yes, to our hearts comes because it can affect his heart as well.

  • Reese has a rare life limiting on agonizing skin condition called epidermal Asus below, sir or E B, which causes skin to become very fragile and can blister or tear, and even the slightest touch is estimated.

  • There are 5000 people living with a B in the UK Currently, Reese was born with the condition and has been living with the effects ever since.

  • He has protected dressings all over his body to prevent infection and as soon as bliss is arise, there popped with a sterile needle.

  • He has a bath once a week to fully clean his rooms, and all of his dressings are then replaced.

  • And no, I need the buff sore stress and change the cause of her.

  • So I am not so unknown.

  • Eat it when I'm having it.

  • I think of the government's when I have finished because I feel a lot better.

  • It has been like this for a few more Arabic daily in the dorms.

  • I think he's got my age where he kind is realizing that things are difficult forehead today that I quite with his friends and stuff are and they were just one night.

  • Everything so much pad send me a text wish about supplies, equipment, tech because he doesn t know he doesn't end up for the pair.

  • That was that was happening.

  • Stuff it.

  • There was nothing I could say, so make you feel better.

  • Today we're joining Reese at its school as new students start the school year.

  • September can be a particularly tricky time for him.

  • I'm alright, people being there.

  • It's just when they walk past and keep stirring.

  • Trying Normal boy just is not manage.

  • It doesn't work.

  • So what's your favorite?

  • Listen, I am a worker but will in about well, given your knowledge, and we get to look after some money motors.

  • Well, we've got some connection dumpsters from Genesis and we're looking to get into.

  • If we developed a new blisters during the day, I'm trade on the ho to take blistered own.

  • To relieve the pain while we're job is to make sure that he's happy and if is girl I can help up.

  • That's my job.

  • Students at recent school have been learning about genetic disorders.

  • They decided they wanted to do something to help caused by a recessive dream.

  • We heard about charity called jeans for genes to help people of genetic diseases.

  • So in a few different ideas on this charity loop, we decided was the best idea on then.

  • A few of us decided to stay behind after school and make them.

  • The students here are fantastic.

  • Really support him.

  • They want to get involved in Everything He started in 2017 is quite shallow.

  • Young boy.

  • We weren't really hardly read tonight.

  • Sure that he's confident, safe and happy.

  • Here Students are selling badges to raise money for race, for the heart and soul into making them.

  • And it shows that you're one of us, that we stand with you.

  • We're with you always.

  • Greece is preparing to celebrate his birthday.

  • How excited I used to be turning 40 h and the 14.

  • I don't know.

  • We were talking just now about being a life limiting condition.

  • So for you to reach another birthday, what does that mean to you?

  • Feels right on its own of a year.

  • Home free, being sore.

  • Oh, okay.

  • But a public appeal for birthday cards by Reese is Mum has lifted his spirits with meal 18 frozen cards on.

  • He's hot, hundreds upon under the presence.

  • Never did I expect anything you know, just just a card at Mandy's.

  • Their you know what people are sent presence just made these there even more Reese.

  • Keep smiling.

  • And don't give up hope that one day things will get better for you.

  • It's my life.

  • Yeah, I know about people.

  • Which would you?

  • Uh I don't like condition in that pitched men feel that.

painful, Horrible.

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患有脫皮症的男孩被送去了18000張卡片 - BBC News (Boy with skin-peeling condition sent 18,000 cards - BBC News)

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    林宜悉 發佈於 2021 年 01 月 14 日
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