Learning to Live - Mermaid Girl: The Next Chapter | Full Documentary | Origin

shiloh kevin is the world's only living mermaid she is about to celebrate her 10th birthday this party and it's a milestone doctor said she would never reach because she suffers from one of the rarest medical conditions she is incredibly unique and she had the most severe form of the disease and yet still survived having beaten all the odds to stay alive shiloh and her family are about to face some of the biggest challenges of their lives just because you were getting divorced doesn't mean you both can't love me how will shiloh cope with the next chapter in her life i'm not sure if i'm ready for this it's a big step in my life [Music] a year has passed since we last visited shiloh pepin and her family in the small town of kennebunkport maine in that time shiloh's health has improved dramatically giving her a new lease on life because she's had to spend less time in the hospital chilo's been able to attend school on a more regular basis and mickey was 16 years old too and take part in some of the things other children her age enjoy doing outside of school she is also making fewer visits to her doctor shiloh's health is really amazing she's doing fabulously and right now she's living as close to a normal life as we could possibly have but the imagined to shiloh's health has brought new challenges over the coming months shiloh and her parents will have to find ways to make her more independent so that she can continue to enjoy a quality of life in the future [Music] since the day she was born shiloh's life has been a fight for survival hey shiloh you want to look at the photo album double digits you made it and i'm going to have a butterfly birthday party you are because of her debilitating disease doctors never thought sheila would live this long but in six months time she could be celebrating her 10th birthday who's that matt's name that's you when i was a little baby i was cute when i was asleep yeah yeah all babies are cute when they're sleeping shiloh suffers from an extremely rare condition called cyrenomya often referred to as mermaid syndrome she was born with her legs fused together below the hip she came out and she was absolutely beautiful and she had so many amelia and then they told us well she probably won't survive next few days okay she's gonna die so we waited for three days she didn't die that's me when i first opened my eyes yep when you first opened your eyes since the first time i looked into her eyes i told her that i'm here i'm your dad and i'm not going anywhere and we're going to get through this together and that's what i meant [Music] that's your stoma that was my first first surgery that was your very first surgery yep in addition to suffering from mermaid syndrome shiloh was born with almost no large intestine and just a small piece of her kidney she has no rectum no vagina and no bladder that's you in the hospital again why it's when you had your transplant your very first transplant her kidney stopped working when she was just a baby for years shylo's parents cared for her while she was on dialysis knowing her life could be cut short at any moment then in 2007 she underwent a successful kidney transplant an operation that would ultimately change her life shiloh's health right now today is better than it's ever been her kidney function is phenomenal she was meeting milestones and that's when we got our first hopeful sign that maybe she might have a chance the improvement to her health meant shiloh and her parents could now contemplate having her legs surgically separated that's the one we're soaking in we're keeping a close eye on it's a complicated medical procedure that would have been too dangerous before now and one that would require five life-threatening operations over the course of three years well you know shy it is it's one of the hardest things we've talked about that before after careful consideration shiloh made the final decision it's kind of like an operation they pull out my legs right here but i don't really want that had to happen because it's my decision i decided i don't want to do it i'm just happy to meet me because i don't want i don't really want to change who i am it's the thing we do opting not to have her legs separated makes shiloh the world's only living mermaid as a result shiloh and her family are entering a new phase in their lives after years of doing everything in their power just to keep her alive they must now find ways to prepare her for the future just the way she is it's a shift not into fixing her physical body but to make the body that she has work for her as best as possible it's nice to come out especially today nice to be out here with you ready aspects of everyday life like taking a shower or just going up and down stairs are extremely difficult for shiloh she will have to learn how to overcome these obstacles in much the same way she learned how to swim late but we're on her way we'll see you soon her parents weren't sure how she would cope in the water but last year they had a specially designed wetsuit made and she started taking lessons i cannot wait to sun again since then shiloh has been swimming twice a week with her coach jared and is now working towards swimming a lot you gotta get down in the pool all on a roll you ready to rock and roll or what yeah all right you know how to get in what yeah you get in the pool honey wow look at you let me get in the water yeah all right i'm trying yeah you're doing awesome wow you're doing this all by yourself [Music] now very nice all right yay there we go look at you she doesn't need any help she doesn't need anybody she's not disabled she's not handicapped she's free and what could you want more for her than that you're cruising keep making the circles look at that sometimes it's very frustrating because there's very little that we can give her but here you know she's just like any other kid just swimming and it makes me very happy towards the end of the lesson shiloh attempts to swim a lap of the pool unaided for the very first time [Music] you can do it almost there [Music] look at him swim down girl [Music] way to go jared is so impressed by shiloh's performance after the lesson he brings up the possibility of her taking part in a swim meet so there's a meet that we're going to have here and it's going to be in july 11th all right so that's going to be our goal that we are ready to swim so you think we could work really hard and do that yes all right well i got some stuff for you thank you all right what do you say participating in a swim meet would be a first for shiloh and socializing with other children would be a big step towards her growing need for independence thank you so much bye jared see ya but it's just the beginning if shiloh and her family are to succeed in making her more independent it will need to be a summer of firsts [Music] nine-year-old shiloh pepin is the world's only living mermaid born with a rare condition called cyronomya her legs are fused together having made the decision not to undergo surgery to have her like separated shiloh and her parents are now working towards making her more independent she's been invited to take part in a swim meet and this summer her parents are hoping she'll be able to spend a week away from them at a summer camp while these are a rite of passage for most nine-year-olds for shiloh they represent a big shift in her life she may attend her local elementary school but having spent so much time in the hospital interacting mostly with adults she finds it difficult to relate to children her own age one of the things we never worried about shiloh is that she hasn't been that social she hasn't been with a lot of kids her own age she hasn't participated because she's grown up in the hospital this is my classroom this is my desk and these are my other friends desks one day minnie was going to school and she was 16 years old and she was enough and mickey was when i first came here i was a little afraid that i wouldn't be able to have friends because i was a little shy and just because i'm different doesn't mean i'm not the same mrs humphrey means to do a craft together that we make ourselves to show that we are team humphrey we drew ourselves so that's my project right there she needs to understand that it's okay to be without us that we're going to be here when she gets back and that she can branch off as scary as it is for mom and dad and for shiloh she needs to develop that independence away from us i love you movie too the key to making shiloh more independent is her ability to move around without the help of her parents today her father elmer is taking shiloh to the hospital for a consultation regarding her mobility how are you shiloh's weight is one of the most important factors in her mobility it's vital that she doesn't gain any weight because even a small increase could affect her ability to move around even excellent go how much my weight did i lost you are the same weight you were last time we saw you no up no down good job maintained so your weight was the same today yeah stable yeah dr matt hand has been shiloh's pediatrician since birth and has played a major role in her progress over the years we really have had to shift gears in terms of shiloh's care and where we're going with things at one point it was all about survival and the leg separation it was literally was she going to be here from day to day and now we're sort of shifting over into where she's going in her life who she's going to be how do we get her more mobile is is really the issue you're upstairs quite a bit and we need to be able to make sure we can get you out of the house right don't tell me mom was talking to you about getting me gay about me scooting me down the stairs yeah that's what she was talking about and i no she wants me to do it i can't believe that well what's why don't you want to go down the stairs is there a problem with it nothing it's not that i want to do it it's just that i've been busy all the time watching tv before we couldn't keep you off the stairs yeah everywhere i think this is important you know why shy because if something happens and you need to get down the stairs you need to be able to do that you don't want to be stuck up there so um for your own safety i think it's important for you to be able to get up and down these stairs okay all right all right good well thanks man you're welcome take care we'll be out in just a little while okay if shiloh is to follow her doctor's orders she will have to overcome her fear of using the stairs chylo's diet also plays a big part in her mobility when she was sick and underweight she was allowed to eat whatever she wanted but doctors became concerned that she was putting on too much weight and advised that she adopted a more healthy diet [Music] in the years since we last visited shiloh her weight has increased slightly the key things that we still have to do is monitor her diet make sure that what she takes in is going to be complementary to her body it's not gonna you know it's not a bunch of crap although she really likes crap what's this that's her one sweet thing she could have for dessert at night after her meal all right with a kidney patient it doesn't matter what it is as long as it's caloric get her some calories so we did and and which was fine except and then she got the kidney and she becomes normal and then everything changes so then you have to backpedal this is the other thing we have to worry about see the 19th garbage it's all sugar yes but that's if i drain the syrup out she's just getting the fruit okay all right but still it's been soaking in the sugar it's better i know i know it's better you know but while her parents both understand the importance of making sure shiloh has a healthy diet they don't always see eye to eye what's this um those things were snacks for school no this we can't do this again this is bad and it isn't just shiloh's eating habits that are causing the problem leslie and elmer don't necessarily agree on the ways in which they should be making shiloh more independent elmer is ensurers shiloh is ready to participate in the swim meet and attend summer camp for a week on her own we'd have to see if it would be too much for her to hold up or not but uh i think she should use it but this is where we need to push her right well you can only push it so far but we haven't pushed you at all well that's why we're thinking about this that's why we're gonna do it it's just it's so hard because i can't take her shopping i can't get her down the stairs and in the car to go shopping so i have to rely on elmer you get caught in a rock and a hard place and where he wants to keep her and keep her safe and keep her alive and me who wants to push her to have a quality of life and have more i want more for her her being alive used to be enough and it is enough i know that but now you know let's push for some quality if shiloh is to compete in the swim meet and go to summer camp her parents will have to settle their differences shilo pepin suffers from mermaid syndrome a rare condition that means her legs are fused together she has required constant medical attention throughout her life but in recent months her health has improved after years of doing everything together just to keep her alive her parents now find themselves wanting different things for shiloh as a result their relationship has suffered i just started realizing that we had changed that what he wanted isn't what i wanted that we were fighting more often because i was unhappy and quite honestly the the spark or the the thing that was there in the beginning wasn't there anymore [Music] we have separated basically because we lost ourselves in the midst of all this it's toward the heart and soul out of me and uh it's hurting me very bad just because you weren't getting the voice doesn't mean you both can't love me i know that i've got to move on and that part of our lives is over now i had decided back in november through different circumstances that i really didn't love elmer anymore i i loved him as their father but the emotions weren't there we were fighting constantly about how to raise her we were fighting constantly about him taking care of her and not doing this and doing that no divorce means that parents aren't and love each other anymore i don't want them to get a divorce but this is the way it's got to be i would love my mom to get back together but they can't because they don't love each other it feels sad a couple of weeks after the separation elmer moved out of the family home and is now living with his mother but he is still shiloh's full-time caregiver and looks after her while leslie is at work this morning he's been called over early because leslie is having problems changing shiloh i feel really bad her bags come off and she hollers to me and hollers to me and i didn't hear her so it was a little traumatic this morning double bag change and then i didn't put the poop bag on right so elmer has to come along and fix it again because shiloh was born without a rectum or a vagina her urine and feces are collected in ostomy bags attached to two openings on the side of her body she has to be changed up to five times a day because the adhesive used to stick the bags to her skin wears off elmer is the ostomy professional because i work all day he deals with it most of the time and quite honestly because i don't do it as much shiloh prefers elmer to do it because he has much more finesse with it than i do i can't say that i've done it really well all the time shiloh's ostomy bags are currently one of the biggest issues in terms of her health and her dependence on elmer is making the separation more difficult for leslie i miss you i'm ready we just dropped shiloh off at our father's to spend the weekend and then we share custody during the week nothing's working out how i want it to be there's no plan that seems to be working out um we're kind of muddling through trying to figure our way tyler has no problem with whatsoever um she has problems staying with me not with him i'm still having problems because i can't figure out how to take care of her on my own and that's difficult because it's hard to separate our lives when i'm so dependent on him right now for taking care of her when she's home with me i can't get her out i can't carry her i can't do what her dad does and it's very apparent who she'd rather be with so it's that's difficult [Music] but leslie is determined not to let her separation from elmer have an effect on shiloh's desire to become more independent we're going to go out for a walk and that was a deal she coos down the stairs for me and we are going to try to get in her chair by ourselves and we are going to try right try try try i know because they live on the second floor the stairs in their house are a major concern shiloh has always relied on her father to carry her up and down he's afraid of using them when he's not there let's go a little bit so i can possibly hopefully cannot if she makes it to the bottom sheila will have overcome one of her greatest fears and will have taken another step towards independence remember what we did last time yeah do you how's that hold on once they get there they need to find a way to get shiloh into her wheelchair oh so you want me to use that board all the way into my chair yep ah clever just because we're different doesn't mean we can't be smart that's right exactly wow hold on all right now go what that's like a slot look at this lever [Music] how am i doing you have to put your foot over here what come on practice breakfast makes perfect yup now climbing that way no yep [Music] did we do it did we do it yeah okay you're so clever yeah ha ha we did it yeah come on let's go for a walk okay [Music] you gonna wait for me don't go too fast down this hill you push to the fire hydrant okay can you do that careful with the dirt but having made their way down they must now find a way of getting back up to the second floor whoa good one what do you think can we do that again oh yeah hey you know what else we have to do though this time what we have to try to get back up i want us to try [Music] she was getting used to the idea of us being divorced but the only thing that was hard was that when she was here with me alone i can't get her out of the house by myself so she correlates that to the divorce i worry i'm not capable of helping her through this and i worry that i'm selfish because i wanted to hear and that her life's going to be too difficult i worry about my choices but when she smiles and is happy i gotta go by that i don't know what else to do despite making it down the stairs her inability to get back up shows just how dependent she still is on her parents nine-year-old shilo pepin suffers from mermaid syndrome a rare congenital disorder that means her legs are joined together this debilitating disease has often prevented shiloh from taking part in activities most children her age take for granted from sleepovers to after-school sports shiloh has always missed out but thanks to a dramatic improvement in her health today she is due to participate in a swim meet for the very first time [Music] her parents recently separated and shiloh has been spending the weekend with her father her mother leslie is on her way to pick shiloh up today is sunday morning and we are going to take shiloh up to a swimming meet up in westbrook because shiloh has missed out on similar events in the past she hasn't had the opportunity to spend a lot of time with children her own age and finds it difficult to make friends you look beautiful today she's really starting to be bothered by being different right now and i think if we can get her to participate in things as much as we can in the ways that she can maybe that isolation won't feel so extreme so she can see what to expect after arrival it becomes clear doesn't want to participate i don't want to do it i'm going to wait till i'm older i know but you still going to swim wait while her swimming has improved dramatically over the last couple of months china is overwhelmed by the crowds and the noise of the competition decided not to compete in the me today the volume in there with all the kids and the starter going off made her a little nervous [Applause] at first she wanted to do it then we started showing her what we're doing and and how many kids are going to be here her nervousness and her anxiety kind of boiled over we decided in order to introduce it a little easier we're going to have her start coming in and swimming with some of our younger kids it might take a little bit of the pressure off might take a little bit of the anxiety off since shiloh wasn't comfortable participating in the swimming leslie has found another opportunity for her to socialize with other children this is the pine tree camp yeah okay this is what we have to do to see if we can get you to go to camp so we think july 21st to july 26th which is five days pine tree camp caters to children with disabilities it would be the first time shiloh has spent more than a night away from her parents are you sure you want me to do this i would like you to do it because you want to and i think it would be good i'm not sure if i'm ready for this yeah how come this is a big step in my life it is a big step in your life okay i'll do it i'm very proud of you do you know how much you've tried this week yeah yeah my mom wants me to go to camp and i'm gonna give it a shot because i think it might be fun for me they have crafts activities nurse there a pool and just might be a new experience for me and remember mom you'll never know unless you try that's exactly right charlie you'll never know unless you try so you can always try sometimes you try to say who you are but who you are inside is what makes you a star that's right that's right that's true camp gives her the opportunity to see that there are other kids that are different that have to overcome things that have to do things a little bit differently or that need help i'm really hoping that it makes her understand that she's not alone it's not just by herself going to camp would represent the biggest step shiloh has taken towards independence it will also be one of the toughest challenges she has faced but the following day leslie is reminded of how much medical attention shiloh still needs with elmer not around to help leslie is again having problems getting shiloh's ostomy bags to stick her bags get broken open and the back washes into her system she can get an infection an infection because she's immunosuppressed can kill her the reason it hurts is because we can't get the bags on and we can't keep the bags on because of your skin and we get the skin because you better be nervous that we're gonna try some different ones i know we're gonna try some different ones honey but they're not working it's not your fault it's just it's just not working right now okay daddy's doing something like that yesterday i was willing to take the risk because what are we doing this all for if we're going to keep her inside and not allow her to do anything and lay down and do all this stuff just to keep her here that's not a life she's 10 years old she wants to do all that stuff and it's like every time we let it do some of that stuff there's consequences so i'm sorry but you're gonna have to lay still travel not forever not forever until we can figure out what's going on with your bags okay leslie now has to decide whether to send her to camp knowing that shiloh's ostomy bags might cause a problem chilo pepin is about to embark on one of the biggest journeys of her life oh it's gorgeous despite her complex medical needs her parents have made the decision to send shiloh to a week-long summer camp oh my god this will be the first time she has spent more than a night away from her parents whichever one you wanted to make her aunt alicia and grandmother jackie have prepared a meal for shiloh on the eve of this special occasion hey amy did you know i'm going to camp tomorrow it's for handicapped children with disabil with disabilities yeah special kids like you yeah you need to bring your own sleeping bag blanket you got a pillow your favorite pillow her aunt realizes just how big a step this is in shiloh's life i think this is completely and utterly out of her comfort zone i mean when you think about all the care that she needs after hours and before bed and in the morning for her to be able to do this is huge try that it is wicked good it's gonna be a whole new experience for her and hopefully she'll embrace it and love it so she can do it again every [Music] year this morning shiloh is leaving for summer camp it's a two-hour drive from her home in kennebunkport not only will this be the first time she has spent more than a night away from her parents it's also the furthest she has been away from home without them i just want to look extra perfect on my greeting have fun in camp okay it's a monstrous step it's going to show us just how brave and focused she is she's just got to get past the part where me or her mother isn't going to be there but it's only going to be for a week and i do believe it'll be awesome for her to do okay this is it a week not my bands oh my god dad look how big that lake that is holy gosh the pine tree camp is a summer camp for children and adults with special needs and disabilities the campers that come to our camp i think it's really important for them to have this type of an experience because a step in independence for them they gain an amazing amount of self-confidence being able to come and meet new people and try new activities so it's a pretty big step for everybody for shiloh she's been in the spotlight a lot she's always been the only person around in a wheelchair with a different type of disability and i think for her it'll be a challenge because here she'll just be one of the other kids having checked in shiloh is shown to her cabin where she will spend the next five nights let's get this on pack let's get it unpacked i'll see you honey you have a good time okay you got my lip gloss it's in there you're all set just don't take a bath in it and we'll call if we need anything okay bye have fun but as it dawns on shiloh that her father has now left she asks the counselor to call her mother leslie hi mom hi shy how are you doing good how are you i'm on bigger so you don't probably recognize me i always recognize you you were camp yep are you okay i'm fine i just missed you i miss you too i miss you too early well i'll just talk to you thursday okay i'll talk to you thursday sweet peace i miss you i miss you you have a good time well all right bye there we go the first night is usually the hardest you miss your family and you're away from mom and dad but once you get past that first night we just get so involved in activities and it's busy all the time and you just get used to it and get into the groove and get into a routine and it works really well it'll be a challenge but i think i think she'll be fine she's going to have a great time nicest camp ever the first activity is swimming in the camp's lake shiloh immediately feels at home in the water and seems to be settling in well but shortly after dinner shylo's ostomy bags need to be changed for the first time a tricky procedure that some of the camp's nurses are unfamiliar with how many times a day does my mom um i don't know like about five five five times to eight times okay so we need to be doing this more often i think the cam student nurses are called in to help but despite the presence of the supervising nurse they are all having difficulties getting the bags to stick shiloh is very needy medically probably the most needy child at camp this session because of the fact those bags don't stay on we need glue too blue yeah the nurses were initially intimidated it was something they had never seen before they weren't really sure how to progress sensing that the nurses are having problems with her bags shiloh decides to help by reading aloud the instructions this is how you clean it this is how to clean it okay i'll eat it here okay cleaning around the stoma areas press use the washcloths crowded and warm water only after struggling for over half an hour the nurses finally get the bags to stick thanks to shiloh's help okay despite her ordeal shiloh has made it through the first day without her parents and is in bed in time for lights out i'll just come say goodnight to you before you go to sleep okay okay perfect perfect the next morning shiloh appears to be adapting well to camp life [Music] she's getting involved in new activities and is even making friends [Music] but later that night just as she seems to be taking it all in shiloh asks to call home dial nine first okay hi mom i just want to come home a day early i know you want to come home is the camp director dawn steps in to offer support yeah okay it takes a couple days to get you know get into the groove they kind of stayed up late last night and then got up really early this morning so i think i think it'll all work out bye the following day one of her new friends tries to console shiloh is this your first year it gets together it really does i'm just a little i'm just upset i was homesick my first year too and this is my fourth year so i know freshmen by the end of the time you won't want to go home i promise you that leaving new friends is cool huh despite their best efforts shiloh is beginning to feel isolated and being away from her parents is proving difficult although she is at camp with other children who have disabilities shiloh is finding it hard to relate to them and views her own disability is very different even the kids here are different because they're just not born with the disease that i have they just don't look the same as me i'm just gonna have to live this condition forever i just want to go home and be with my family again shiloh pepin has spent the last four days at a summer camp it's the longest period of time she's ever spent away from home [Music] after a tough week she is about to be reunited with her parents wait just a minute i'll go get her despite their recent separation leslie and elmer have traveled together to pick her up okay so after this i gotta gather all the rest of my syringes because i'm going home tonight she did a really great job at camp i think she's taking away a little bit of independence she can look at this and say you know i don't have to live with mom forever there's gonna come a time where i can be on my own and i can do it makes me proud of her yeah you had a good time i missed you so much [Music] daddy daddy daddy have fun just before she leaves kelly charlotte's new friend arrives to say goodbye okay if we gave you kelly's number and her address so they could write and chat oh yes that would be awesome hug i want a hug i'll be good yeah be good stay away from the boys i won't don't you even push me there kelly with summer camp behind me you better believe that charlo can now enjoy the rest of her vacation and the knowledge that she has taken a big step towards independence after a summer of achievements today shylo will celebrate perhaps her most remarkable feat it's the morning of her 10th birthday party while her family makes the final preparations shiloh gets ready for what will be a very special day considering they never told me i'd have her for a minute to get to 10 it's the best stay in the world isn't it and you know what it means it means we might get even 10 more [Music] i'm excited about the party you're so excited about it i'm excited for you nine years ago almost to the day i was here at child's first birthday party and her grandmother looked at me and said so matt are we going to be doing this again next year and i looked at her and i just said i honestly don't know jackie i'm just not sure when i see her swimming in the pool it's just an amazing accomplishment and a testament to her spirit and her parents spirit they told me my child would never be born and i just celebrated her 10th birthday you have no idea the feeling that it gives you know that the life they said you never have i just had for 10 years and i can have for 10 more or 20 more or 30 more it's incredible it's amazing that she's made it this far it's just one of those things you can't predict you just just keep going as far as it'll go but she never gave up so neither did we got you a bikini it's a bra she's ten she's talking about kissing boys and i'm sitting there going where did this little baby go that they said they wouldn't survive for three days it's a miracle my daughter's a miracle i want to thank everybody for coming she's here for 10 years and it's primarily because of the help and what you guys have done um dr matt jared everybody that i can't even say and all the kids so thank you for coming and eat all the food because i don't want you leftovers i couldn't be more proud of her and i'm very grateful and happy to be her dad and i can honestly say that my life is fuller and richer because she's in it she's gone to camp for the first time in life she's been away from her father and i for more than one night she has been swimming she's contemplating competing she's achieved a level of independence i didn't never expected her to achieve so i'm very proud this party has been the best day of my life you

Channel: Origin

Views: 1,326,950

Keywords: bbc documentary, origin story, parenting, wellbeing, mindfulness, mums meet up, family lives, kensington mums, mind, mums group, mummy social, raising a child, mermaid girl, mermaid girl movie, mermaid girl full movie, mermaid girl documentary, mermaid girl full documentary, documentary, full documentary uk, full documentary, mermaid girl episode, mermaid girl full episode, Shiloh Pepin 2020, Shiloh Pepin mermaid girl, Shiloh Pepin interview, Shiloh Pepin

Id: ODuN2tpppow

Length: 42min 20sec (2540 seconds)

Published: Fri Dec 20 2019