My Deadly Skin (Medical Documentary) – Real Stories

My Deadly Skin (Medical Documentary) – Real Stories


tonight on real families the children that grow too much scale we asked her what she wanted for Christmas and she said normal skin and we had to sort of sit and explain that that wasn’t can ever be possible for a run two families battling a painful and incurable genetic condition that strikes one child in a million when she was born I was gutted everybody would look once the perfect baby she looked very odd [Music] you I was actually quite ill all the way through the pregnancy not just for sickness but I had lots of infections and really not very well and I knew for quite a while that things weren’t right I don’t know if I dreamed about it I don’t think I did it was just there in my head the whole time I just knew that something was going to be very wrong I actually officialized what Lucy was gonna look like and to me the best Viking but it was I thought it should look like something from outer space now if I’d have told anybody that they probably thought I was crazy and then she when she was born she was exactly as I’d seen er that is just the strangest thing to imagine because how could anybody imagine a child looking the way Lucy did I saw Lucy before Jan did everybody went quiet it was just a hush and that’s when Jan said is there something wrong what baby as they lifted her out you could have dropped the needle on the floor and heard it and I just said what’s wrong what’s wrong mister there’s something wrong with her skin so they wrapped her up and showed it to me in Clive and then took her off to special care a first reaction oh my god what we done Clive and Jan’s daughter Lucy was born with Harlequin ichthyosis an incurable condition which causes the body to produce too much skin a life sentence for both sufferer and family alike Harlequin ichthyosis is one of the most rare type it is a severe expression of abnormal skin and has a high mortality the whole body is completely encased in this very very thickened scaly hard suit of armor and it causes tightness so there is restriction of movement of the arms and legs and in particular the fingers and toes the face is very deformed the eyelids are inverted ears are bound down and the mouth is very tight because of the tight skin around it it can be a very scary sight and a very worrying sight particularly for parents immediately loved to write from the logo the fact that she looked the way she did didn’t change how she felt well Jen want to do when the baby was born when Lucy was born was actually be whether to hold her and so do mum things whether she’s our little doll need fight for her whatever there wasn’t long before we saw through the skin and we could see what was underneath that didn’t take long but that first initial shot was never talked to the last ring Lucy is now 17 she’s the oldest Harlequin sufferer surviving in Britain one time in school someone is tired is mean we go Manor I was gonna die when I was 16 I didn’t know what where that came from because my friend told me said that she’d heard it from someone and she’d asked me if it was true and I said no no no as far as I know her survival is down to a life-saving ritual of scrubbing and bathing every morning Lucy’s mother Jan gets her up at 4:30 but just loved to be I just get up at like Kortright that leads to people Dean something was made any other day I got up at 7:00 and that and I was thinking well I got up at a bus for and I really I didn’t sign of in I just sat there and fought it despite the punishing regime Jan and Clive decided to try for a second child the chances of having another child with Harlequins was exactly 1 in 4 to have a second child wasn’t entirely my decision I wasn’t happy having a second child I once knew she was born with her problems German to give me a child who was perfect I wanted Clive to have that and experience holding a new born babe with soft lovely skin Clive was very unsure about whether he wanted another one and I’m afraid it probably was well I know it was my persuasion that we had a second one so reluctantly I agreed to have st. child and we have Hannah Angie oh when Hanna was born that was the confirmation of the skin condition reappearing again because it said for a couple little bits and pieces they’re just like going back to youth Hannah was born with added complications she has cerebral palsy and is small for her age Clive felt very sad and obviously he must have been angry as well at the time he used to do karate and I know he just came and thumped hell out of the punch bag to get rid of the frustrations took my knuckles down the wrong blood and very angry I think if he’d had his choice we probably wouldn’t have had a second one but having said that Hannah is the apple of his eye so hopefully I’m not hopefully we did do the right thing I think I’ve never had difficulty discipline any child at all so did my reading difficulties accepting Lucy or Hannah did my doors overnight Lucy and Hannah grow as much skin as a normal body would in 14 days every morning and every night they have to bathe for up to two hours the top layers of excess skin have to be rubbed off and softened to prevent it cracking and causing infection this painful process began at birth the night sister was amazing and we actually used to have competitions to see who could peel off the most skin sounds quite sore but it was a way of getting through it during the day I’d be doing it and I would still go through at night but they insisted that I rest she’d comes to me in the mall and say look what I’ve taken off and when she came on at night I said how are people you if this is how much skin I’ve got hmm no loads escaped today I try and avoid this orbit yes I’m sorry say it better so much skin when Hannah was born thick it was really difficult with Lucy only being very small and young as well it was a case of Doom one and then doing the other one it was incredibly hard work now there are some parts of it that are easier but there are a big large areas to scrub so from that point of view it’s hard and also from my point of view I’m getting older and also because I’ve got arthritis now it makes it quite difficult by doing it every day stop testing your skin via satellite doesn’t it yeah anything you get very tight and you get the loads and those skin skin is particularly bad I mean we’ve sat quite together on we times when when it’s really really sore that’s all then we both get upset when Lucy cries don’t know because like yeah you need to die when she can’t do it I don’t like being here I know you prefer to be have the way you don’t know when she’s getting script yeah in the early days Iceland was scrubbed the girls and and of getting addressed and we had scaffolders right and I was doing Lucy and Hannah and and Lucy’s crying Oh daddy don’t please daddy don’t and I said to John Gurdon told him scaffold was all my doors that’s what we have to done and that to me was what the last Tom’s are done throughout their childhood Jan has had to bathe and scrub Lucy and Hannah every day the skin is the largest organ in the body and a barrier to infection the scrubbing and creaming is what’s kept the girls alive it’s only now they’re older that they can take responsibility for their own creaming yeah sometimes this yeah it does make me feel better Hannah and Lucy used 1/12 kilo tub of cream between them every five days I always wonder like how come in this always what did we have to beat one just polish skin I’m always wondering that I never asked mum but I always wonder it’s in the mornings in the afternoons I’m just before we go to bed I don’t remember when she was small one Christmas we asked her what she wanted for Christmas and she said normal skin which was incredibly heartbreaking because I couldn’t do it for her I’m glad that Lisa’s got the same conditions made Lucas the way she didn’t I’d be all alone left out well she’d be all alone and left out Lucy has had to learn how to cope with being different her condition has also affected her sight leaving her blind in one eye and with only 10% vision in the other despite this she’s managed to attend mainstream school and past eleven GCSEs she’s now in her final year at college if I’m there at college or die or put cream on my face with hands all day and then at lunchtime oh and go and get changed like change her clothes completely then it’s not clean like my face and hands that in the afternoon and then when I finish college I’ll go home I should get creamed and changed again and then like watch telly do College work or go out on my bike or whatever I tend to get ready for bed I have I early and sit upstairs in my room and that and go to sleep in half time and then my mum wakes me up when she goes to bed to put to cream again like we mentor my clothes again and then then I get up again in here other cops of London town hard-working very even true at the moment Lucy studying childcare she hopes to be a play assistant she’s on her two-day work placement working with special needs children my little girl has come to me over time I’ve got grease and oil and I’m like no it’s cream and another little girl she says and Lucy you’ll be white when you next year and sorry to say yes because she she I think if I say no she gets upset and gets hurt that I won’t get better finish now he finished the BET’s family live in Bradwell near Great Yarmouth the two daughters have an incurable skin disorder caring for them occupies mum Jan’s every waking moment her day starts at 4:30 bathing and creaming the two girls the lotion they use means all clothing and bedding must be laundered daily I strip the girls BET’s off stripping all the shapes what pillowcases need to come off and then they all go in pink bags that we get provided with I hate Monday mornings because it’s rubbish day as well so I’ve got all the rubbish saw and then the sheet man comes as I call him because I get delivered sheets 5 the hospital or through social services social services also provide a carer for 9 hours a week to help with the girls but the housework is left to Jon a case of making them up again which is to draw sheets a bottom sheet pillows and a top sheet and that’s on each bed and I do that every single day Lucy and Hannah are two of only seven Harlequin sufferers in the UK being so unusual makes living an ordinary life difficult I like to go shopping it’s my favorite thing I like to be cinema I tend to tap my niece and nephew Hannah to cinema you can kiss me you can hold me baby talk to me my hair I will kill you see I’m not going to yell there’s a lot of holidaymakers and I get a lot of people staring at me when I was truck backs of my friends this woman came in and she just suddenly said does your skin hair and I said yes and then she said oh it hit we didn’t get sunburned because that happened to me last summer another woman came in with her child in the child right now look at her and and it’s not this woman again does Tara I said oh he got sunburned and my friend his time at length got sunburned she’s got something wrong with their skin and she’s like oh yes and then I went into the toilet and I can hear my fin and they were talking about someone and I had my friendís yellow and she’s like she hasn’t got sunburned who’s yoga I like that yeah I just don’t like the label because I scratch me Helen is coming a lot more where now she’s realizing that she is different to other people I told her story of that I used to think I’d get better and she’s a but aren’t we gonna get better and I had to sit down it’s fine to her no no no we’re not getting better and that confused a little bit oh I like the fluffy yeah I know if I’m out somewhere sometimes there’s some other children a spare you see so I if it was like little children but big children shouldn’t stare I like it they always go as a regular three smell of Britney’s new person why he : it’s naked bare hand whole sentence yes huh % oh no we have got holes in Lucy and Hannah’s condition is inherited it’s only triggered when both parents have the same defective gene the chances of that happening are one in a million the girls have only ever met one other Harlequin in their lives we had a phone call one day from somebody who had given birth to a family Roy still giving birth to a little girl and that little girl was Dana Bowen she’s eight now for babies when she was born I was gutted she looked very odd obviously I tried to follow all the procedures when you first pregnant if not doing these not doing that eating the right things and stuff and I was like okay well what what’s happened where have I gone wrong one of the ways we’re describing it one of the doctors is used is the word grotesque and to be honest in some ways he’s actually quite fitting well then no one wants to think of their cuddly pink little baby as grotesque but in some way she was I mean her skin was extremely thick across the chest and stomach it was split the eyelids were inverted the the mouth was very wide it actually looked like she had no ears because they were actually skinned over her hands and feet were clawed it did look very very serious and it was we’ve literally saw Dana for a couple of minutes and then they like whisper away out to the neonatal unit and then Dana was like blue lighted the next day up to Great Ormond Street because there’s a one in four chance of any child Sam and I have of having Harlequin ichthyosis I think we thought yeah quite a few years ago that yes we would like a second child but we wouldn’t try for a second child until Dana was an age where she could do some of her own skin care and where Sam wouldn’t be left with two babies so it was it was only stopped when Dana was seven that we thought okay let’s it’s time to time to maybe have another one and roll the dice I think in your heart of hearts you do think oh please let it be okay not have the condition again but like I said to have it was a risk we were going to take which at the end of the day they’re our girls and love them to bits no matter what so we do the facial today the bones are in Great Ormond Street having medical photos taken from the moment the girls were born they’ve lived their life under the microscope the condition is so rare the doctors don’t get to see a real-life case studies many offers [Music] it’s interesting because Harlequin babies are very different what generally one from the others very very different these two can only similar dr. Atherton has followed the children’s progress since birth because it’s incurable he will continue to monitor them throughout their lives what changes from day to day everything amount flakiness the redness readiness can change in most children with this Harlequin ichthyosis die within a few days of birth the first kind of big problem that it causes is his massive fluid loss in our skin the main purpose of skin is to keep liquid in the body so many of them actually about in the past died of renal failure in infancy and that is part of the purpose of applying oil to the skin infection is another issue because just as this skin is not able to keep water in it it’s not able to keep bacteria out and it’s very very easy for bacteria to gain entry through the skin I see your hands before I know Dana was unfortunate because the skin on her fingers and toes was extremely tight early on and the tightness of the skin interfered with the flow of blood so she’s lost several of the tips of her fingers the disease that Dana and her sister have is an extremely rare one and there are very few survivors I suppose it’s fair to say that we don’t exactly know what the future will throw up in terms of problems for them I used to think a long wait for day and was born everything mapped out I even danced in the retirement nao-san will tell you I’m lucky if I think a week ahead we almost live for the moment yeah every day’s a bonus I do I do master I do still think about the future and more think about it the more difficulty it will be from birth the risk of infection and complication never leaves these children’s over the last year Hannah’s health has been a constant worry she’s physically exhausted has lost her appetite and has had a seizure this last year has been extremely hard because there’s been lots of times when I actually haven’t known myself had to do with Hannah she kept complaining every softn of heavy hands and heavy feet and we put it down to the way she was lying or because of the cerebral palsy and she really was struggling too she just wasn’t our Hannah and that came to a head when she had the seizure my legs I however had them crossed and I was really stiff and I was in the bath at that point my mum can’t dress me shut flow for the ambulance and then I went straight up the James Paget Hospital even though she has signs of having a seizure her chest feels like it did before her hands are heavy she knows she starts worrying and panic and witness audio gooky tell Hannah very much wears a heart on a sleeve and you can always tell when something’s bothering her and suffers upset tonight Hannah’s in Great Ormond Street tests at her local hospital showed that the seizure and her tiredness are due to her gut leaking vital minerals further tests will be done to see if the problem is linked to her skin condition yeah I got a thing on my hand yeah yeah yeah that they like to love them just bite my toes she’s had quite a few major setbacks but has come out through them remarkably well I love you it’s just this time this has been a long time she’s not being my Hannah for ages so we’re hoping that maybe you know this little result didn’t get my little girl back all right love you all right bye-bye daddy I feel a bit mad first but older I just can’t wait wait wait because I fell B oh I’ll be able to find out what’s wrong with me I’m suggesting nothing love you like I don’t want to leave that one yeah for the someone you can see [Music] Hanna Beth’s is a great ormond street hospital for a week of tests she’s been unwell for the last 12 months and doctors are trying to find out why dr. Lindley is Hannah’s consultant and it’s clearly very unusual even for a hospital like this though clearly we have investigated large numbers of children with other it coz form so I think one has to go into this with an open mind knowing that we might turn up a complication of Harlequin ichthyosis or indeed we might find a problem with another Jean perhaps adjacent to or linked to Harlequin ichthyosis they’re gonna do a gastroscopy and a colonoscopy which is a case of going up through her bottom into the bowel that way and down through a mouth to have a looking at tummy in the bowel I never do some biopsies as well in the next five days Hanna will be seen by numerous experts as well as the problem with her gut she’s failing to grow properly more tests will be done to detect why I think this time we may get some balances because there again so many people to see her from every faith but it’s the most that’s ever been so looked into so it’s all very encouraging Hanna and her mom now have to wait until the results of all the tests come back this could take a few months in a family with Harlequin children the life-saving skin care regime dominates every Sam has no help with the children and the prospect of a family holiday is daunting the family choose to stay close to home Sam’s day starts at 6:00 with Dana soaking in a special bath lotion donors in the bath for at least half an hour then we get a washed hair washed out of the bath and she’s creamed dressed hair dried eyedrops and then she goes off to school when Laura came along Clive changed his job in order to be around as much as possible Sam had already given up work I used to work on a thoroughbred stud farm used to do the mares and foals it being a dirty job had to give up people move on and their families still found it a bit different after baby Lara has been bathed and creamed Sam has to Hoover the entire house this has to be done every day sometimes twice a day because of the girls skin flaking they’re two separate washing machines one from clothes clothes and more I have two to three loads a day I’ve just there’s my washing machine needs its pump done quite regularly and the door seal is wrecked men a cream when Dana gets back from school the creaming cycle starts again bring Dana home nice goal cream diner up and redress her saw arty out and then after Tate’s run the baths Dana soaked my bath Lara and then I took do Lara cream Lara dress ready for bed and then I redo the girls again about a half 11 12 o’clock at night they both get creamed Dana might have another drink then but Laura definitely has a another bottle before she sailed for the night ready five six again later in an effort to keep Dana’s life as ordinary as possible the Bowen center to a mainstream school we’ve never kept anything secret from Dana she understands about a skin condition we try not to go on about it too much to her but be blunt and just honest you’re different you’ve got a skin condition but a lot of other people have got other things wrong a day for blind you’re special but you’re special to us and these other people are special to their families with disfigurement I mean huge amount depends on the child’s personality assumption are just better able to cope than others for the families it depends really on them treating the child absolutely as normal I think their main problems are esthetic coping with the appearance of their skin the impact that has on other people and of course one would anticipate that that will be a very particular problem during adolescence and famous biggest challenge I guess is being accepted by a lot of people children generally aren’t a problem because they’re so honest they’ll just walk up say Matt how are you why is your face red Georgia said what poorly skin that’s it they’ll go up and play together but she’s now starting to notice that a Dobson Astari whispery in Anna I think I’ve just told her to ignore him or just stick the tongue out [Music] Lucy and Hannah have survived and even thrive despite the odds today Lucy’s taking part in a 10-mile charity bike ride but it’s not without its hazards her eye condition is caused by the flaking of the skin behind the eyelid which scratches the cornea as has left her blind in one eye and with only 10% vision in the other it’s important for her to do it because I think you know she’s overcome so many things and this is another thing – you know that she’s you know my style I can still do it I can still get on a bike and that’s why it’s really nice that I mean there’s always somebody with it and this young lad that’s like you know he’s ever so good and each other but all the bikes are and be careful you know this sort of thing so yes that’s really nice but it’s a bit worried I use Tel Aviv for them to be accepted by everyone I used to get me upset when we take make out me at school and be nasty to manage to get really really upset I’ve come to him cry and stuff I kind of got over it and eventually got to the stage where I just thought if I like me they like me I do believe that probably it’s gonna take somebody very special but I’m sure she would love to have a boyfriend she probably tell you different do you have a boyfriend no I don’t have a boyfriend would you like a boyfriend today if I hope there is somebody there who can see through the cream and the skin and see the girl underneath I do think it’s gonna be a very difficult time for her I think she does want to go clubbing and leave the boys and everything and I think she’s holding us off back there’s no reason the white Lucy shouldn’t have a normal relationship and have have children and there’s no reason why she shouldn’t have normal babies she would have to meet somebody that’s holding the recessive gene to actually have Harlequins I self there was absolutely no reason why she shouldn’t have healthy normal babies it’s been three months since Hannah Betts went to Great Ormond Street for tests today’s the day she gets the results I’m hoping that we’ll say my results would be really good she’s me going on about it for weeks as soon as may hit I’m gonna get my results this month I’m gonna get my results this month and so she’s been it’s cheating up paramount always she always worried every little thicket ever should be fine and I think it was just nice to get over done with now particularly for Hannah Hannah’s consultant from Great Ormond Street dr. Lindley has traveled to their local hospital for the clinic and he has some surprising news you want some answers from Aden it would be very nice yes there are easy answers and there are less easy answers all those those tests of absorption we did were actually all quite normal but she’s actually leaking much more magnesium from the kidneys it’s easy to treat if that’s all it is absolutely easy to treat it couldn’t be easier the other thing we turned up which is fascinating might actually explain the growth problem in that for growth hormone to work it has to bind approaching the blood and for several reason that protein is missing and no one’s ever come across anyone richer happy really strange after and a whole new forever yeah we’ll send you a copy of momentum which over here at the you dog that’s incredibly rare anyway something rare is you know quite a lot to take on board but I’ll be something to celebrate in the Bowen household – its Lara’s first birthday today but despite the excitement there’s no let-up in the skincare routine in Laurel till the age of one without having to go back into a spit or since the birth is a major milestone there’s always the initial fear that some they’re not going to survive because they are extremely prone to picking up infections keeping both girls fully lathered up with cream really is key to their health be nice just to like get them dressed in their party stuff and let them enjoy the the dice for obviously I’ve got the cream so you try and make it as easy as possible for them daddy do face yeah he’s married you [Music] [Music] in the last 12 months there have been many milestones in the Harlequin sisters lives but most important of all the four girls have been involved in a worldwide research project last year they provided DNA samples for analysis allow the results are to be released eight years on Dana meet Hannah and Lucy again it’s really nice to see it and see that she’s doing well as well see if they were family well I feel excited and interested and I watch Dana get creamed as well I put it all right yes same but different cream I think it’s where our downlod pose STG on the field and welcome to our into the Institute the research program is being led by Professor David Council of London University and the news he has for the families is better than any of them could have hoped the breakthrough came about eight or nine months ago with a new piece of DNA technology called a gene chip you’ll be working on they stood like people working for 10 or 20 years then suddenly in this technology we have the result in two or three days it’s very exciting so that identifies the Harlequin gene yes at the moment I can see two possible areas of improved therapy one is gene therapy I would not hold I wouldn’t hold my breath about the attacks along looking longer to longer term but there are the possibilities to actually work out which factor the protein is actually involved in transporting from within the cell to outside and if we can do that I see no reason why those bats could not be added to your creams sort of a23 that would cut down the skin problem I hope hope I would leave I would thought it would alleviate of you it might mean that they’d be able to find something to add to your cream but hopefully will mean that your skin no that your skin will improve good my skin tone like that ever again I’m not sure it’ll turn exactly like that it’ll be like I get really close to looking like that it takes a long time to get this far and the fact that we know these active it’s just one defective protein in all the children with Harlequin means that you know we’re all sort of singing from the same hymn sheet in terms of understanding the therapists being told that there could be something that might make things easier for the girls makes the last 18 years even more worthwhile to think that maybe their lives might be more normal than we could ever have expected and so it just saw no is the icing on the cake I suppose excuse me just get emotional it’s more like it’s like it’s just amazing obviously it’s to early days but it’s fantastic finding out how quickly they discovered the gene how technology’s moving on what the possibilities are making up with with gentle eyes and the girls again yes brilliant the professor has one more surprise for them now as you know we’ve looked at your DNA I can say you’ve actually got a mutation in common but what this means is that you came from the same geographic area some point way way back generations and generations back so there is I see you’re not closely related but very distantly related great-great great-granddad atta boy it’s been an extraordinary day for both families although a complete cure is a long way off there’s real hope that within the next couple of years a supplement could be added to their cream that would improve their skin but it’s all dependent on funding [Music] it’s the eve of Lucy’s 18th birthday she is the oldest Harlequin survivor in Britain and she’s entering unknown territory less than a handful of known sufferers have lived this long we’d been at one oldest you didn’t know where I was gonna go look when I got an infection on my skin before no one knew what it was not to have loads of tests and stuff and different things on my skin – I work out what it was and it was only a normal infection other people get when something new happens I test me and me photographs for like medical things and it’s so annoying I just want to be a girl it took us in them tell me what’s wrong Lizzie’s birthday I’m having a birthday to celebrate and I’m excited she’s always my best friend and I love her more I think about it the work they’re more mostly I tend to become because the last couple of days I really have been very emotional keep thinking of the day she was born I mean we didn’t think she’d survive at all she fought hard and she might from the vodka as you know she’d come into this world and there was no way she was gonna do anything but this day well used to get a candle when you were 21 now Lucy’s 18 she can legally go to the pub her dad takes her out for her first drink I remember when Lucy was a year about a year old and one of the doctor said did we do the right thing and I said look there he can’t tell Nana say we didn’t and as far as I was concerned as long as they’ve got a good quality of life that was the most important thing every brewery wrong Lucy nearly finished er college cause she’s got a good quality of life yes it’s hard for them at times it must be very difficult but yeah they just life’s for living and they live it with Hannah and Lucy reaching teenage years it does help think that you know our girls are gonna make it to that age because obviously quite a few of the children haven’t survived so getting to that stage is a big plus that’s it so here are some keepsakes from my favorite boy Dinah’s who she is because of what she’s gone if I could change your skin brilliant but if I could change your skin without changing how she is that’s why I’ll have it soon morning see you all in all my [Music] [Music] painting must are coming when she was about I used several I used to steal fruit from the fruit bowl other people’s food off their plates if she if they weren’t watching she would go down the bins Rebecca would eat almost anything I remember the day that she ate the cat food to wash her mouth BAM it was nothing to her but the taste must have been vile some families resort to locking up food cupboards Rebecca’s house has an alarm in the kitchen so if Rebecca got this far the alarm would pick her up and then the alarm will go off despite all this Rebecca is getting big

100 thoughts on “My Deadly Skin (Medical Documentary) – Real Stories”

  1. This poor girl. I can't imagine having a skin condition like this. These girl are special, adorable and beautiful. I don't get why god would do this to a CHILD (If you believe in one). They have to suffer every single day of their life. Being in pain constanly. I can't believe this.

  2. Is it just me or does the second mom seem to be complaining about everything I understand it’s hard but I mean it seems like she regrets it either way strong families

  3. I’m having a hard time understanding why these people would try to have another baby when they know that the baby might have a chance of getting this condition. It’s almost like these wonderful girls aren’t good enough and it’s not fair for the baby. They want to please their husbands who aren’t even doing anything.

  4. Even though they have this condition their parents still love them to pieces and that’s amazing because there are some people would get rid of their child if this happened. They care so much about their children it’s phenomenal. They work so hard every day to care for them and that’s amazing.

  5. My name is lucy as well and I have a sister called hannah but we are from Ireland i wasn’t expecting me and her name but it’s common Lucy is a English name I think

  6. Human beings are extremely perversely cruel that they still haven't permitted doctor assisted suicide on every country. There are people you must let them to choose between life long suffering and a quick death. Society owes them at-least that.

  7. I know people are saying it is selfish to have another child and it is very because the chances to have another child with that condition is very high but imagine how she feels about that people think she is kinda a mistake and she should have never been born in the first place.

  8. What I’m going to say is painful and heartbreaking… but i would let them decide if they wanted to continue living with so much pain and struggle or if they wanted to have relief and peace instead of being miserable…

  9. I love all of these little girls…God Bless them! & to the people talking bad about the mother wanting a second child….YOU'RE NOT IN HER SITUATION! SO STOP JUDGING HER!

  10. How incredibly selfish this woman is!!!! She had a 1 in 4 chance her 2nd kid would have the disease is a huge indication that you would love ur current child and don’t be so FN SELFISH!!!!!! These poor girls have suffered so very much and it’s unreal how this psychotic woman rationalized that having a 2nd “normal” child would make them happy!!! What if she was “normal “? The older sibling would have a life long struggle trying to keep up with her. I’m hoping this woman is infertile now, but if she’s not, she needs to close her legs and stop reproducing all together!

  11. I don't like how the father didn't want a second child. I mean it was his opinion but how he was putting it made it seem like Hannah Betts was a mistake.

  12. It’s amazing how these parents talk. I guess they are being honest but imagine what their kids will think if they watch this. Things like I wanted him to have a perfect soft skin baby. Basically saying our first kid is far from perfect. Or talking about how he didn’t want a 2nd child and how mad he was. It’s almost as if they don’t want either kid.

  13. God this is hard to watch. Living like this looks like absolute torture and they are just crying from the pain. I saw somebody say they should be put to rest. Not sure I agree with that but they def never should have had a 2nd kid. They should have adopted or paid a surrogate. As for the first kid, I don’t know what I would have done. It sounds so messed up, but I would have been afraid to even hold my kid the way it looked at birth. I mean it literally looked like an alien from a movie. I don’t know what I would have done. Giving it away would have been a coward move. Would it have been legal to try and put it to rest like someone on here suggested? It just seems like these kids are miserable and their life is gonna be super hard. I mean who wants to live like that? I don’t know. Tough questions to answer. And I just heard blind in one eye and only 10% in the other? I mean I guess she graduated college and seems to be doing well considering but she’s gonna be blind with this horrible skin disease. She’s always gonna need someone to take care of her. She has to cream her body multiple times a day. I mean how hard must it be? I hate this crap.

  14. Dios Santísimo terrible la situación de estás familias. No tenemos cómo agradecerle al Santísimo qué nuestros hijos hallan nacído bien.

  15. I'm so sorry for both of them …. I wish I could meet them and be their friend…. they are beautiful! And i hope they get better …

  16. I tend to agree with other comments that after being told there was a 25% chance having another child the same the mum went on to get pregnant…but then after all this is a personal choice and I have to give credit for the parents continuation of care and love through the children’s lives….who are we to judge and how would we know about the emotional journey? These children are an inspiration to us all and I hope that they live happy and continue to live their lives with courage and determination. God bless you all. X

  17. I'm so sick of the mom's saying "normal" how about you stop making your kid's feel even more so alienated by defining them as imperfection in your eyes!! They endure enough from the outside…… Same for your idiotic remark of giving your husband another baby with "soft" skin……. You're no better than the ugly world your kid's have to deal with. Absolutely disgusting. Love your babies and stop looking for "normal" they will see these videos of you saying that

  18. I think the kids are lucky to have each other. You don't know what you would do until you are in that situation. We can all say I WOULD NEVER have another baby, but in reality, I think the fact that the girls have someone that knows exactly what your going through, can relate to, can have that special bond with, is great!
    Its not easy, but life in general isn't easy, every person is dealt a different hand at birth.

  19. Un mundo lleno de casos asombrosos q valen la pena investigar y luchar por ser mejores como humanos… ante tanta gente disconforme con su pinche vida siendo "normales "y entonces q queda para estos pobres Ángeles….. mundo Cruel…. así nos va

  20. Please white people in the comments…..stop acting like you know everything and trying to judge the reason that they chose to have two kids with this condition.
    Shut up and worry about yourself.
    Only god can judge !!!

  21. I'm sure they could have gone with in vitro fertilisation if they wanted another child so desperately… It's an autosomal recessive disease, isn't it? (Please correct me if I am wrong). They could have surely consulted a doctor or geneticist before having a second child.
    Scratch that, they should have consulted a specialist before having a child and monitored the fetus before it was born, as should all of us, especially if we have family history. I don't know about anyone's opinion, but I wouldn't want to bring to this world a child who will suffer from such a severe disease.

  22. When her father said that her mother wanted to give him a “perfect child” I felt so bad. How can Lucy’s mother not think she’s perfect just the way she is?

  23. Lucy’s twitter handle is @lucylou87. She’s 32 and been in a relationship for 7 years! ❤️

    Hanna’s now 30. ❤️

  24. No hate and I think she's beautiful just the way she is , but the pictures of her as a baby, the red eyes kind of scared me

  25. The dear sweet newborns. They are so precious. They are adorable. But its unbelievable that both sets of parents had TWO GIRLS with it. Those statistics are astronomical.

  26. Why doesn't she get help from a social worker for the girls as well as the sheet washing provided by the Hospital????? The other mother does. That doesn't seem right to me.

  27. Don’t get me wrong, she has the write to do what she wants with her life and her family, but having a second child with the knowledge that there was a chance of having a child with the same condition seems incredibly stupid to me.

  28. No offence but it’s mean how they wanted a 2nd child cause it’s like them saying that if her 2 child were normal then the 1st child isn’t good enough and her children are very beautiful girls no doubt

  29. Majority of peoples in the comment section wanted to show them as mother teressa…. Shame on you all who Pretending and saying fake stuff for likes…

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