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Court métrageTranscription
00:04Sous-titrage Société Radio-Canada
00:30Having beaten all the odds to stay alive, Shiloh and her family are about to face some of the biggest
00:35challenges of their lives.
00:36Just because you were getting divorced doesn't mean you both can't love me.
00:40How will Shiloh cope with the next chapter in her life?
00:43I'm not sure if I'm ready for this. It's a big step in my life.
00:55A year has passed since we last visited Shiloh Pepin and her family in the small town of Kennebunkport, Maine.
01:03In that time, Shiloh's health has improved dramatically, giving her a new lease on life.
01:09Because she's had to spend less time in the hospital, Shiloh's been able to attend school on a more regular
01:15basis.
01:16And Mickey was 16 years old, too.
01:18And take part in some of the things other children her age enjoy doing outside of school.
01:24She is also making fewer visits to her doctor.
01:27I already know it! It's sucking on my head!
01:29Shiloh's health is really amazing. She's doing fabulously.
01:33And right now, she's living as close to a normal life as we could possibly have imagined.
01:39But the improvement to Shiloh's health has brought new challenges.
01:43Over the coming months, Shiloh and her parents will have to find ways to make her more independent
01:48so that she can continue to enjoy a quality of life in the future.
01:52Take care, you guys!
01:53Me, too.
01:59Since the day she was born, Shiloh's life has been a fight for survival.
02:05Hey, Shiloh, you want to look at the photo album?
02:07Double digits! You made it!
02:10And I'm going to have a butterfly birthday party.
02:12You are?
02:13Because of her debilitating disease, doctors never thought Shiloh would live this long.
02:18But in six months' time, she could be celebrating her tenth birthday.
02:23Who's that?
02:24That's me.
02:25That's you!
02:26When I was a little baby.
02:27I was cute when I was asleep.
02:29Yeah, all babies are cute when they're sleeping.
02:32Shiloh suffers from an extremely rare condition called sirenomelia, often referred to as mermaid syndrome.
02:39She was born with her legs fused together below the hip.
02:43She came out and she was absolutely beautiful and she had sirenomelia and then they told us,
02:47well, she probably won't survive the next few days.
02:50Okay, she's going to die.
02:52So we waited for three days, she didn't die.
02:54That's me when I first opened my eyes.
02:57Yep, when you first opened your eyes.
02:58Oh, shit.
02:58Since the first time I looked into her eyes.
03:00I told her that I'm here, I'm your dad and I'm not going anywhere and we're going to get through
03:05this together.
03:06And that's what I meant.
03:09What was that?
03:10That's your stoma.
03:11That was my first, first surgery.
03:13That was your very first surgery, yep.
03:15In addition to suffering from mermaid syndrome, Shiloh was born with almost no large intestine and just a small piece
03:22of her kidney.
03:24She has no rectum, no vagina and no bladder.
03:28That's you in the hospital again.
03:29Why?
03:30It's when you had your transplant, your very first transplant.
03:33Her kidney stopped working when she was just a baby.
03:36For years, Shiloh's parents cared for her while she was on dialysis, knowing her life could be cut short at
03:43any moment.
03:45Then in 2007, she underwent a successful kidney transplant, an operation that would ultimately change her life.
03:54Shiloh's health, right now today, is better than it's ever been. Her kidney function is phenomenal. She was meeting milestones
04:03and that's when we got our first hopeful sign that maybe she might have a chance.
04:13The improvement to her health meant Shiloh and her parents could now contemplate having her legs surgically separated.
04:19That's the one we're soaking in, we're keeping a close eye on.
04:22It's a complicated medical procedure that would have been too dangerous before now and one that would require five life
04:28-threatening operations over the course of three years.
04:30Well, you know Shiloh, it's one of the hardest things. We've talked about that before.
04:34After careful consideration, Shiloh made the final decision.
04:38It's kind of like an operation. They pull out my legs right here, but I don't really want that to
04:45happen because it's my decision and I decide I don't want to do it.
04:50I'm just happy to meet me because I don't really want to change who I am.
04:56Opting not to have her legs separated makes Shiloh the world's only living mermaid.
05:02As a result, Shiloh and her family are entering a new phase in their lives.
05:08After years of doing everything in their power just to keep her alive, they must now find ways to prepare
05:14her for the future just the way she is.
05:17It's a shift not into fixing her physical body, but to make the body that she has work for her
05:24as best as possible.
05:25It's nice to come out, especially today.
05:28Nice to be out here with you.
05:31Ready?
05:33Aspects of everyday life, like taking a shower or just going up and down stairs, are extremely difficult for Shiloh.
05:39She will have to learn how to overcome these obstacles in much the same way she learned how to swim.
05:45We're late, but we're on our way. We'll see you soon.
05:47Her parents weren't sure how she would cope in the water, but last year they had a specially designed wetsuit
05:52made and she started taking lessons.
05:54I cannot wait to swim again.
05:57Since then, Shiloh has been swimming twice a week with her coach, Jared, and is now working towards swimming a
06:02lap of the pool all on her own.
06:04You ready to rock and roll or what?
06:05Yes.
06:06All right.
06:06You know how to get in.
06:09What?
06:11Yeah, you get in the pool, honey.
06:14Wow.
06:15Look at you.
06:16Want me to get in the water?
06:18Yes.
06:18All right.
06:19Go!
06:39Yay!
06:42There we go.
06:43Look at you.
06:44She doesn't need any help.
06:46She doesn't need anybody.
06:47She's not disabled.
06:48She's not handicapped.
06:50She's free.
06:51And what could you want more for her than that?
06:55You're cruising.
06:56Keep making the circles.
06:58Look at that.
07:03Sometimes it's very frustrating because there's very little that we can give her, but here, you know, she's just like
07:09any other kid.
07:09Just swimming.
07:12And it makes me very happy.
07:15Towards the end of the lesson, Shiloh attempts to swim a lap of the pool unaided for the very first
07:20time.
07:25You can do it.
07:31Almost there.
07:39Look at you swim, Don Girl.
07:44All right!
07:46Woo!
07:47All right!
07:50That was awesome!
07:54Way to go!
07:56Jared is so impressed by Shiloh's performance, after the lesson, he brings up the possibility of her taking part in
08:03a swim meet.
08:04So there's a meet that we're going to have here, and it's going to be in July 11th.
08:10All right, so that's going to be our goal, that we are ready to swim.
08:14So do you think we could work really hard and do that?
08:16Yes!
08:17All right, well, I've got some stuff for you.
08:19Thank you.
08:20All right?
08:20What do you say?
08:22Participating in a swim meet would be a first for Shiloh, and socializing with other children would be a big
08:27step towards her growing need for independence.
08:30Thank you so much.
08:31We'll see you.
08:31Bye, Jared.
08:33See ya!
08:34But it's just the beginning.
08:36If Shiloh and her family are to succeed in making her more independent, it will need to be a summer
08:41of firsts.
08:44Nine-year-old Shiloh Pepin is the world's only living mermaid.
08:49Born with a rare condition called sironomelia, her legs are fused together.
08:54Having made the decision not to undergo surgery to have her legs separated, Shiloh and her parents are now working
09:00towards making her more independent.
09:03She's been invited to take part in a swim meet, and this summer, her parents are hoping she'll be able
09:08to spend a week away from them at a summer camp.
09:13While these are a rite of passage for most nine-year-olds, for Shiloh, they represent a big shift in
09:18her life.
09:19She may attend her local elementary school, but having spent so much time in the hospital interacting mostly with adults,
09:26she finds it difficult to relate to children her own age.
09:34One of the things we never worried about Shiloh is that she hasn't been that social. She hasn't been with
09:38a lot of kids her own age. She hasn't participated because she's grown up in the hospital.
09:42This is my classroom. This is my desk. And these are my other friends' desks.
09:50One day, Minnie was going to school, and she was 16 years old, and she was in love.
09:55When I first came here, I was a little afraid that I wouldn't be able to have friends, because I
10:04was a little shy, and just because I'm different doesn't mean I'm not the same.
10:10Mrs. Humphrey made us do a craft together that we make ourselves to show that we are Team Humphrey. We
10:18drew ourselves. So that's my project right there.
10:23She needs to understand that it's okay to be without us, that we're going to be here when she gets
10:27back, and that she can branch off as scary as it is for Mom and Dad, and for Shiloh.
10:33She needs to develop that independence away from us.
10:37I love you. I love you too.
10:41The key to making Shiloh more independent is her ability to move around without the help of her parents.
10:48Today, her father, Elmer, is taking Shiloh to the hospital for a consultation regarding her mobility.
10:54Hey, Shiloh. How are you?
10:57Shiloh's weight is one of the most important factors in her mobility.
11:01It's vital that she doesn't gain any weight, because even a small increase could affect her ability to move around.
11:07290 pounds, even. Excellent. Yes.
11:11Go!
11:12How much weight did I lose?
11:14You are the same weight you were last time we saw you. No up, no down. Good job. Maintained.
11:20So your weight was the same today?
11:22Yeah, stable.
11:24Dr. Matt Hand has been Shiloh's pediatrician since birth and has played a major role in her progress over the
11:30years.
11:31We really have had to shift gears in terms of Shiloh's care and where we're going with things.
11:37At one point, it was all about survival and the leg separation.
11:40It was literally, was she going to be here from day to day? And now we're sort of shifting over
11:45into where she's going in her life, who she's going to be.
11:48How do we get her more mobile is really the issue.
11:51You're upstairs quite a bit, and we need to be able to make sure we can get you out of
11:54the house, right?
11:56Don't tell me Mom was talking to you about getting me, getting, about me scooting me down the stairs.
12:01Yeah, that's what she was talking about.
12:04No, she wants me to do it! I can't believe this!
12:07Well, why don't you want to go down the stairs? Is there a problem with it?
12:11Nothing. It's not that I want to do it. It's just that I've been busy all the time watching TV.
12:16When you were four, we couldn't keep you off the stairs. You were everywhere.
12:19I think this is important. You know why, Shai?
12:21Because if something happens and you need to get down the stairs, you need to be able to do that.
12:25You don't want to be stuck up there.
12:27So, for your own safety, I think it's important for you to be able to get up and down these
12:31stairs, okay?
12:32All right.
12:32All right. Good.
12:33Well, thanks, Matt.
12:34You're welcome. Take care. We'll be out in just a little while, okay?
12:38If Shiloh is to follow her doctor's orders, she will have to overcome her fear of using the stairs.
12:46Shiloh's diet also plays a big part in her mobility.
12:49When she was sick and underweight, she was allowed to eat whatever she wanted.
12:53But doctors became concerned that she was putting on too much weight and advised that she adopt a more healthy
13:00diet.
13:02In the years since we last visited Shiloh, her weight has increased slightly.
13:07The key things that we still have to do is monitor her diet, make sure that what she takes in
13:12is going to be complementary to her body.
13:15It's not going to, you know, it's not a bunch of crap. Although she really likes crap.
13:20What's this?
13:22That's her one sweet thing she could have for dessert at night after her meal.
13:27All right.
13:28With a kidney patient, it doesn't matter what it is as long as it's caloric. Get her some calories.
13:33So we did, which is fine, except for then she got the kidney and she becomes normal, and then everything
13:40changes.
13:40So then you have to backpedal.
13:42This is the other thing we have to worry about. See, the 19 carbohydrate, it's all sugar.
13:45Yes, but if I drain the syrup out, she's just getting the fruit.
13:48Okay. All right. But it's still been soaking in the sugar.
13:52It's better. I know. I know it's better.
13:56But while her parents both understand the importance of making sure Shiloh has a healthy diet,
14:01they don't always see eye to eye.
14:04What's this?
14:08Those things for snacks for school.
14:11No. We can't do this again. This is bad.
14:14And it isn't just Shiloh's eating habits that are causing the problem.
14:18Leslie and Elmer don't necessarily agree on the ways in which they should be making Shiloh more independent.
14:24Elmer isn't sure if Shiloh is ready to participate in the swim meet and attend summer camp for a week
14:29on her own.
14:30We'll have to see if it would be too much for her to hold up or not.
14:36But I think she should use it.
14:38So this is where we need to push her.
14:39Right. Well, we can only push it so far.
14:42But we haven't pushed her at all.
14:44Well, that's why we're thinking about this.
14:48That's why we're going to do it.
14:49Yeah.
14:52It's just, it's so hard because I can't take her shopping. I can't get her down the stairs and in
14:57the car to go shopping.
14:59So I have to rely on Elmer.
15:01Caught in a rock and a hard place where he wants to keep her and keep her safe and keep
15:05her alive.
15:07And me who wants to push her to have a quality of life and have more. I want more for
15:13her.
15:14Her being alive used to be enough. And it is enough. I know that. But now, you know, let's push
15:19for some quality.
15:21If Shiloh is to compete in the swim meet and go to summer camp, her parents will have to settle
15:26their differences.
15:29Shiloh Pepin suffers from mermaid syndrome, a rare condition that means her legs are fused together.
15:36She has required constant medical attention throughout her life.
15:40But in recent months, her health has improved.
15:43After years of doing everything together just to keep her alive, her parents now find themselves wanting different things for
15:50Shiloh.
15:51As a result, their relationship has suffered.
15:55I just started realizing that we had changed, that what he wanted isn't what I wanted, that we were fighting
16:01more often because I was unhappy.
16:03And quite honestly, the spark or the thing that was there in the beginning wasn't there anymore.
16:12We have separated basically because we lost ourselves in the midst of all this.
16:21It's torn the heart and soul out of me and it's hurt me very bad.
16:26Just because you were getting divorced doesn't mean you both can't love me.
16:30I know that I've got to move on and that part of our lives is over now.
16:37I had decided back in November through different circumstances that I really didn't love Elmer anymore.
16:42I love him as their father, but the emotions weren't there.
16:47We were fighting constantly about how to raise her.
16:49We were fighting constantly about him taking care of her and not doing this and doing that.
16:54Divorce means that parents aren't in love with each other anymore.
16:58I don't want them to get a divorce, but this is the way it's got to be.
17:03I would love my mom to get back together, but they can't because they don't love each other.
17:07It feels sad.
17:09I know.
17:16A couple of weeks after the separation, Elmer moved out of the family home and is now living with his
17:21mother.
17:22But he is still Shiloh's full-time caregiver and looks after her while Leslie is at work.
17:28This morning, he's been called over early because Leslie is having problems changing Shiloh.
17:34I feel really bad. Her bags come off and she hollers to me and hollers to me and I didn't
17:38hear her.
17:38So it was a little traumatic this morning.
17:41Double bag, change, and then I didn't put the poop bag on right.
17:45So Elmer has to come along and fix it again.
17:49Because Shiloh was born without a rectum or a vagina, her urine and feces are collected in ostomy bags,
17:54attached to two openings on the side of her body.
17:59She has to be changed up to five times a day because the adhesive used to stick the bags to
18:04her skin wears off.
18:07Elmer is the ostomy professional because I work all day. He deals with it most of the time.
18:12And quite honestly, because I don't do it as much, Shiloh prefers Elmer to do it because he has much
18:18more finesse with it than I do.
18:19I can't say that I've done it really well all the time.
18:22Shiloh's ostomy bags are currently one of the biggest issues in terms of her health.
18:27And her dependence on Elmer is making the separation more difficult for Leslie.
18:35I miss you. I'm ready.
18:39Come, my love.
18:41Don't call my love.
18:44Sorry, honey.
18:45We just dropped Shiloh off at her father's to spend the weekend and then we share custody during the week.
18:53Nothing's working out how I want it to be.
18:56There's no plan that seems to be working out.
18:59We're kind of muddling through trying to figure our way.
19:03Shiloh has no problem with whatsoever.
19:07She has problems staying with me, not with him.
19:12I'm still having problems because I can't figure out how to take care of her on my own.
19:16And that's difficult because it's hard to separate our lives when I'm so dependent on Elmer right now for taking
19:23care of her.
19:24When she's home with me, I can't get her out. I can't carry her. I can't do what her dad
19:29does.
19:32And it's very apparent who she'd rather be with. So that's difficult.
19:45But Leslie is determined not to let her separation from Elmer have an effect on Shiloh's desire to become more
19:51independent.
19:51And we're going to go out for a walk. And that was a deal. She scoops down the stairs for
19:55me and we are going to try to get in her chair by ourselves.
19:59And we are going to try, right? Try, try, try.
20:02Yeah, yeah, I know.
20:04Because they live on the second floor, the stairs in their house are a major concern.
20:09Shiloh has always relied on her father to carry her up and down and is afraid of using them when
20:15he's not there.
20:17Let's go a little bit so I can close to open him.
20:18Leslie cannot lift Shiloh, so they need to find a way down in his absence.
20:23If she makes it to the bottom, Shiloh will have overcome one of her greatest fears and will have taken
20:28another step towards independence.
20:30Let's see how we do this.
20:32Remember what we did last time?
20:34Yeah, do you? How's that?
20:41All right, hold on.
20:43Once they get there, they need to find a way to get Shiloh into her wheelchair.
20:48Oh, so you want me to use that board all the way into my chair?
20:51Yep.
20:52Ah, clever. Just because we're different doesn't mean we can't be smart.
20:57That's right, exactly.
20:58Whoa!
21:00Hold on.
21:01All right, now go.
21:03Whoa!
21:05This looks like a slide.
21:06Yeah.
21:07Look at this.
21:08It's clever.
21:10Thank you.
21:11You have to put your foot over here.
21:14What?
21:15Come on, practice.
21:17Practice makes perfect.
21:18Yep, I was climbing that way.
21:21Yep, yep.
21:25Did we do it?
21:26Did we do it?
21:27Did we do it?
21:28Yeah.
21:29Did we do it?
21:30Okay, Mom.
21:31You're so clever.
21:33Yeah.
21:33Ha ha!
21:35We did it!
21:36Yeah, come on, Mom.
21:37Let's go for a walk.
21:39Okay.
21:42Are you going to wait for me?
21:44Don't go too fast down this hill.
21:45You push to the fire hydrant.
21:48Okay, can you do that?
21:50Careful of the dirt.
21:53But having made their way down, they must now find a way of getting back up to the second floor.
21:58Whoa, good one!
21:59What do you think? Can we do that again?
22:01Oh, yeah.
22:02Hey, you know what else we have to do though this time?
22:04What?
22:04We have to try to get back up.
22:06I want Daddy to do it.
22:09I want us to try.
22:10I want Daddy to do it.
22:11Shiloh.
22:12Shiloh.
22:13Daddy to do it.
22:14Shiloh.
22:14Shiloh.
22:15Honey.
22:16Daddy.
22:17Shiloh.
22:18She was getting used to the idea of us being divorced, but the only thing that was hard was when
22:22she was here with me alone,
22:23I can't get her out of the house by myself.
22:25So she correlates that to the divorce.
22:28I want to help her do it.
22:32I worry I'm not capable of helping her through this, and I worry that I'm selfish because I wanted to
22:39hear her and that her life's going to be too difficult.
22:41I worry about my choices, but when she smiles and is happy, I've got to go by that. I don't
22:46know what else to do.
22:49Despite making it down the stairs, her inability to get back up shows just how dependent she still is on
22:55her parents.
22:57Nine-year-old Shiloh Pepin suffers from mermaid syndrome, a rare congenital disorder that means her legs are joined together.
23:05This debilitating disease has often prevented Shiloh from taking part in activities most children her age take for granted.
23:12From sleepovers to after-school sports, Shiloh has always missed out.
23:18But thanks to a dramatic improvement in her health, today she is due to participate in a swim meet for
23:24the very first time.
23:28Her parents recently separated, and Shiloh has been spending the weekend with her father.
23:33Her mother Leslie is on her way to pick Shiloh up.
23:36Today is Sunday morning, and we are going to take Shiloh up to a swimming meet up in Westbrook.
23:44Because Shiloh has missed out on similar events in the past, she hasn't had the opportunity to spend a lot
23:50of time with children her own age, and finds it difficult to make friends.
23:54What have you got on your feet? You look beautiful today.
23:55She's really starting to be bothered by being different right now.
23:59And I think if we can get her to participate in things as much as we can, in the ways
24:04that she can,
24:05maybe that isolation won't feel so extreme.
24:15With this wound in full speed, Shiloh's coach, Jenna, takes her poolside so she can see what to expect.
24:31Shortly after a ride, it becomes clear that Shiloh doesn't want to participate.
24:37I don't want to do it. I'm going to wait until I'm older.
24:40I know, but you're still going to swim.
24:42Wait.
24:47When her swimming has improved dramatically over the last couple of months,
24:51Shiloh is overwhelmed by the crowds and the noise of the competition.
25:02Shiloh decided not to compete in the meet today.
25:05The volume in there with all the kids and the starter going off made her a little nervous.
25:11At first she wanted to do it, then we started showing her what we're doing and how many kids are
25:16going to be here.
25:17Her nervousness and her anxiety kind of boiled over.
25:20We decided in order to introduce it a little easier, we're going to have her start coming in and swimming
25:25with some of our younger kids.
25:27It might take a little bit of the pressure off, might take a little bit of the anxiety off.
25:33Since Shiloh wasn't comfortable participating in the swimming, Leslie has found another opportunity for her to socialize with other children.
25:43This is the Pine Tree Camp?
25:44Yeah.
25:45Okay, this is what we have to do to see if we can get you to go to camp.
25:48Okay.
25:49So we're thinking July 21st to July 26th.
25:53Okay.
25:54Which is five days.
25:55Pine Tree Camp caters to children with disabilities.
25:58It would be the first time Shiloh has spent more than a night away from her parents.
26:03Mama?
26:04Why?
26:04Are you sure you want me to do this?
26:06I would like you to do it because you want to.
26:08And I think it would be good and fun for you.
26:09I'm not sure if I'm ready for this.
26:12Yeah, how come?
26:13It's a big step in my life.
26:14It is a big step in your life.
26:17Okay, I'll do it.
26:20I'm very proud of you.
26:21Do you know how much you've tried this week?
26:23Yeah.
26:24Yeah?
26:25My mom wants me to go to camp and I'm going to give it a shot because I think it
26:29might be fun for me.
26:30They have crafts, activities, nurse there, a pool, and it just might be a new experience for me.
26:38And remember mom, you'll never know unless you try.
26:42That's exactly right, Shiloh.
26:43You'll never know unless you try.
26:45So you can always try.
26:45Those who try to say who you are, but who you are inside is what makes you a star.
26:50That's right.
26:51That's right.
26:52That's true.
26:54Camp gives her the opportunity to see that there are other kids that are different, that have to overcome things,
26:59that have to do things a little bit differently or that need help.
27:02I'm really hoping that it makes her understand that she's not alone.
27:06That she's not just by herself.
27:08Going to camp would represent the biggest step Shiloh has taken towards independence.
27:13It will also be one of the toughest challenges she has faced.
27:18But the following day, Leslie is reminded of how much medical attention Shiloh still needs.
27:24With Elmer not around to help, Leslie is again having problems getting Shiloh's ostomy bags to stick.
27:31Her bags get broken open and the back washes into her system, she can get an infection.
27:37An infection because she's immunosuppressed can kill her.
27:40The reason it hurts is because we can't get the bags on and we can't keep the bags on because
27:45of your skin.
27:46And we get the skin because of your bags.
27:47We're going to be nervous that we're going to try some different ones.
27:49I know we're going to try some different ones, honey, but they're not working.
27:54It's not your fault. It's just, it's just not working right now. Okay?
27:59Daddy's doing something right now.
28:00Yesterday, I was willing to take the risk because what are we doing this all for if we're going to
28:05keep her inside and not allow her to do anything and lay down and do all this stuff just to
28:09keep her here? That's not a life.
28:12She's 10 years old. She wants to do all that stuff. And it's like every time we let her do
28:15some of that stuff, there's consequences.
28:17So I'm sorry, but you're going to have to lay still.
28:20Forever?
28:21Not forever. Not forever until we can figure out what's going on with your bags. Okay?
28:28Leslie now has to decide whether to send her to camp, knowing that Shiloh's ostomy bags might cause a problem.
28:36Shiloh Pepin is about to embark on one of the biggest journeys of her life.
28:41Look at that! Oh, it's gorgeous!
28:44Despite her complex medical needs, her parents have made the decision to send Shiloh to a week-long summer camp.
28:53Oh, my God! Come on!
28:54This will be the first time she has spent more than a night away from her parents.
28:59Whichever one you want it to be.
29:00Her Aunt Alicia and Grandmother Jackie have prepared a meal for Shiloh on the eve of this special occasion.
29:07Hey Andrew, do you know I'm going to camp tomorrow?
29:09It's for handicapped children with disabilities.
29:13Yeah, special kids like you. Like me?
29:16You have to bring your own sleeping bag?
29:18Yeah. Blankets.
29:20You got a pillow? Your favorite pillow?
29:22Mama.
29:24Her Aunt realizes just how big a step this is in Shiloh's life.
29:29I think this is completely and utterly out of her comfort zone.
29:32I mean, when you think about all the care that she needs after hours and before bed and in the
29:36morning, for her to be able to do this is huge.
29:38Try that. It is wicked good.
29:42It's going to be a whole new experience for her, and hopefully she'll embrace it and love it so she
29:46can do it again every year.
29:48I love you.
29:50I love you.
29:51Bye!
29:53Hurry, hurry up! Don't worry!
29:57This morning, Shiloh is leaving for summer camp.
30:01It's a two-hour drive from her home in Kennebunkport.
30:04Not only will this be the first time she has spent more than a night away from her parents,
30:08it's also the furthest she has been away from home without them.
30:12I just want to look extra perfect on my training.
30:16Mwah!
30:18Mwah!
30:19Have fun at camp, okay?
30:20I will.
30:22It's a monstrous step.
30:24It's going to show us just how brave and focused she is.
30:27She's just got to get past the part where me or her mother isn't going to be there.
30:31But it's only going to be for a week, and I do believe it'll be awesome for her to do.
30:35Okay, this is it. A week without my bed.
30:40Oh my God, Dad, look how big that leg that is!
30:45Holy gosh!
30:48The Pine Tree Camp is a summer camp for children and adults with special needs and disabilities.
30:54The campers that come to our camp, I think it's really important for them to have this type of an
30:58experience
30:58because of a step in independence for them.
31:01They gain an amazing amount of self-confidence being able to come and meet new people and try new activities.
31:07So it's a pretty big step for everybody.
31:11For Shiloh, she's been in the spotlight a lot.
31:14She's always been the only person around in a wheelchair with a different type of disability.
31:18And I think for her it'll be a challenge because here she'll just be one of the other kids.
31:23Having checked in, Shiloh is shown to her cabin, where she will spend the next five nights.
31:30Let's get this stuff unpacked!
31:31Let's get it unpacked!
31:32I'll see you, honey. You have a good time, okay?
31:36You got my lip gloss?
31:37It's in there, Shiloh. You're all set.
31:40Just don't take a bath in it.
31:42And we'll call if we need anything.
31:45Bye!
31:46Have fun.
31:47Okay.
31:47But as it dawns on Shiloh that her father has now left, she asks the counselor to call her mother,
31:52Leslie.
31:53Hi, Mom.
31:54Hi, Shai.
31:56How are you doing?
31:57Good. How are you?
31:58I'm on speaker, so you don't probably recognize me.
32:02I always recognize you.
32:05You at camp?
32:06Yep.
32:07Are you okay?
32:08I'm fine. I just miss you.
32:10I miss you, too.
32:12I miss you, too.
32:13It's so early.
32:16Well, I'll just talk to you Thursday.
32:18Okay, I'll talk to you Thursday, sweet pea.
32:20I miss you.
32:21I miss you.
32:22You have a good time.
32:23I will.
32:24Alright.
32:25Bye.
32:25Bye.
32:28There we go.
32:30The first night is usually the hardest.
32:32You miss your family, and you're away from Mom and Dad.
32:34But once you get past that first night, we just get so involved in activities, and it's busy all the
32:39time,
32:39and you just get used to it and get into the groove and get into a routine, and it works
32:43really well.
32:44It'll be a challenge, but I think she'll be fine.
32:46She's going to have a great time.
32:48Nicest camp ever.
32:53Ready?
32:54One, two, three.
32:56The first activity is swimming in the camp's lake.
33:00Shiloh immediately feels at home in the water, and seems to be settling in well.
33:07Make some noise!
33:11Don't wait to be hungry to still have a swim.
33:16But shortly after dinner, Shiloh's ostomy bags need to be changed for the first time.
33:22A tricky procedure that some of the camp's nurses are unfamiliar with.
33:36The camp's student nurses are called in to help, but despite the presence of the supervising nurse, they are all
33:44having difficulties getting the bags to stay.
33:47Shiloh is very needy medically.
33:49Probably the most needy child at camp this session because of the fact those bags don't stay on.
33:55We need glue, too.
33:57Glue?
33:58Yeah.
33:59The nurses were initially intimidated.
34:02It was something they had never seen before.
34:04They weren't really sure how to progress.
34:06Sensing that the nurses are having problems with her bags, Shiloh decides to help by reading aloud the instructions.
34:13This is how you clean it.
34:15This is how you clean it.
34:16Okay.
34:17I'll leave it to you.
34:17Okay.
34:18It's cleaning around the stone areas.
34:20Press, use the washcloth, sprouted, and warm water only.
34:26After struggling for over half an hour, the nurses finally get the bags to stick, thanks to Shiloh's help.
34:32Okay.
34:33Good job, Shiloh.
34:34Good job.
34:35Thank you.
34:36Thank you.
34:36How are you guys?
34:39Thanks.
34:39Despite her ordeal, Shiloh has made it through the first day without her parents and is in bed in time
34:45for lights out.
34:47I'll just come say good night to you before you go to sleep.
34:49Okay.
34:49Okay.
34:50Perfect, perfect.
35:01The next morning, Shiloh appears to be adapting well to camp life.
35:10She's getting involved in new activities and is even making friends.
35:26But later that night, just as she seems to be taking it all in, Shiloh asks to call home.
35:31All you have to do is dial nine first.
35:33Okay?
35:36Hi, Mom.
35:37I just want to come home a day early.
35:40I know you want to come home a day early, but you have a six-day year.
35:43I can't wait that long.
35:45It was fun.
35:47And you don't want to miss the last day at camp.
35:50No.
35:51So many of these shoes go to bed early.
35:58The camp director, Dawn, steps in to offer support.
36:01Yeah.
36:01Okay.
36:02It takes a couple of days to get into the groove.
36:04They kind of stayed up late last night and then got up really early this morning.
36:07So I think it'll all work out.
36:10All right.
36:11Can I talk to her a little bit more?
36:13Yeah.
36:14Sure.
36:14Yeah.
36:15Okay.
36:16I'm so proud of you.
36:18I think you're doing a wonderful job.
36:20I love you.
36:21I love you too.
36:23Okay.
36:23Bye-bye.
36:24Bye.
36:26The following day, one of her new friends tries to console Shiloh.
36:31Is this your first year?
36:34It is.
36:35It is.
36:36It gets better.
36:38It really does.
36:39It really does.
36:40I'm just a little, I'm just homesick.
36:42I was homesick my first year too.
36:46And this is my fourth year.
36:49So, I know.
36:52Trust me, by the end of the time, you won't want to go home.
36:57I promise you that.
37:00Yeah.
37:01Leading new friends is cool, huh?
37:04Yeah.
37:05Right now?
37:07But despite their best efforts, Shiloh is beginning to feel isolated and being away from her parents
37:13is proving difficult.
37:16Although she is at camp with other children who have disabilities, Shiloh is finding it
37:21hard to relate to them and views her own disability as very different.
37:27I think the kids here are different because they're just not born with the disease that
37:32I have.
37:34They just don't look the same as me.
37:36I'm just going to have to live this condition forever.
37:42I just want to go home and be with my family again.
37:53Shiloh Pepin has spent the last four days at a summer camp.
37:56It's the longest period of time she's ever spent away from home.
38:02After a tough week, she is about to be reunited with her parents.
38:06Wait just a minute.
38:07I'll go get her.
38:08Despite their recent separation, Leslie and Elmer have traveled together to pick her up.
38:13Okay, so after this I got to gather all the rest of my syringes because I'm going home
38:17tonight.
38:18She did a really great job at camp.
38:20I think she's taking away a little bit of independence.
38:23She can look at this and say, you know, I don't have to live with mom forever.
38:27There's going to come a time where I can be on my own and I can do it.
38:31Makes me proud of her.
38:32Yeah.
38:33You had a good time.
38:34I missed you so much.
38:37Oh.
38:39Daddy.
38:40Daddy.
38:41Daddy.
38:42How you doing?
38:45Did you have fun?
38:46Yeah.
38:48Just before she leaves, Kelly, Shiloh's new friend, arrives to say goodbye.
38:53We were wondering if it was okay if we gave you Kelly's number and her address so they
38:57could write and chat?
38:58Oh, yes.
38:59That would be awesome.
39:01Hug.
39:01I want a hug.
39:03I'll be good yet.
39:04Be good.
39:05Stay away from the boys.
39:07I won't.
39:08Don't you even push me there, Kelly.
39:09Come on, boy.
39:10With summer camp behind her.
39:11You better rock.
39:12Shiloh can now enjoy the rest of her vacation in the knowledge that she has taken a big step
39:17towards independence.
39:27After a summer of achievements, today Shiloh will celebrate perhaps her most remarkable feat.
39:34It's the morning of her tenth birthday party.
39:39While her family makes the final preparations, Shiloh gets ready for what will be a very special
39:44day.
39:49Considering they never told me that I'd have her for a minute, to get to ten, it's the
39:53best day in the world, isn't it?
39:55And do you know what it means?
39:56It means we might get even ten more.
40:00I'm excited about the party.
40:02Are you so excited about it?
40:03I'm excited for you, too, honey.
40:10Nine years ago, almost to the day, I was here at Shiloh's first birthday party, and her
40:16grandmother looked at me and said, so, Matt, are we going to be doing this again next year?
40:20And I looked at her and I just said, I honestly don't know, Jackie.
40:24I'm just not sure.
40:25Two, three.
40:28When I see her swimming in the pool, it's just an amazing accomplishment and a testament
40:34to her spirit and her parents' spirit.
40:40They told me my child would never be born, and I just celebrated her tenth birthday.
40:44You have no idea the feeling, but it gives you to know that the life they said you never
40:49have, I just had for ten years and I can have for ten more or twenty more or thirty more.
40:55It's incredible, it's amazing that she's made it this far.
40:58It's just one of those things you can't predict, you just keep going as far as it'll go.
41:01But she never gave up, so neither did we.
41:03They got you a bikini!
41:05It's a bra!
41:06A bra?!
41:08She's ten, she's talking about kissing boys, and I'm sitting there going,
41:11where did this little baby go that they said wouldn't survive for three days?
41:15It's a miracle.
41:17My daughter's a miracle.
41:19I want to thank everybody for coming.
41:20She's here for ten years, and it's primarily because of the help and what you guys have done.
41:27Dr. Matt, Jared, everybody that I can't even say, and all the kids.
41:31So thank you for coming, and eat all the food, because I don't want any leftovers.
41:36Hip hip! Hooray!
41:39I couldn't be more proud of her, and I'm very grateful and happy to be her dad.
41:43And I can honestly say that my life is fuller and richer, because she's in it.
41:49She's gone to camp for the first time in her life.
41:52She's been away from her father and I for more than one night.
41:55She has been swimming.
41:57She's contemplating competing.
42:00She's achieved a level of independence I never expected her to achieve.
42:05So I'm very proud.
42:07This party has been the best day of my life!
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