LIVING with a rare condition is hard, but so is finding love. These incredible couples found each other because of what makes them truly unique. They have come together and not only face living with some of the most challenging conditions in the world, but also the prejudice that comes with that. Making them some of the most inspiring couples out there.
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00:00Living with a rare condition is challenging, so is finding love.
00:05I just seen him across the sports corner, I was like, oh, he's a bit of alright.
00:09But these incredible couples found one another because of what makes them truly unique.
00:15EB has definitely brought us together.
00:18Together, we have broken over 600 bones.
00:22Yes, 600.
00:24Making these couples some of the most inspiring out there.
00:28As they go through life together,
00:30living with some of the rarest and most challenging conditions in the world.
00:36I was just so determined to be able to prove all the haters wrong.
00:41So, we have known each other since Chris was born,
00:44because I'm a little bit older than he is.
00:47We make it happen, we make it work, that's how we're coupled.
00:51Starting with Gail and Tim, whose rare condition is so misunderstood,
00:56it often causes people to recoil from them in public.
01:00I've been asked not to swim in swimming pools.
01:02If I sit down beside somebody, they'll get up and they'll move.
01:05I've had people surround me and pray for me.
01:09Gail was born with neurofibromatosis.
01:12Because I have neurofibromatosis along the top of my gum,
01:16and along my pockets.
01:18I've got to be really careful, so I have a soft-headed toothbrush here.
01:25Because it bleeds easily, you've got to just not be assertive
01:29when brushing your teeth.
01:31I was born with neurofibromatosis.
01:34My mother had it, and she had seven children,
01:37and the three youngest of her children had it.
01:40So, it's a genetic condition.
01:42I'm a mutation.
01:44Neither of my parents have it.
01:4650% of new cases of neurofibromatosis are genetic mutations.
01:51Neurofibromatosis causes tumours to form on nerve tissue.
01:55The tumours can form anywhere in the nervous system,
01:59including the brain and spinal cord.
02:03Neurofibromatosis can be a very difficult word to say,
02:06but it can also be a very difficult disease.
02:09It's a very difficult word to say,
02:11but it can also be a very difficult condition to live with.
02:14And it varies with different people.
02:16Some people have these growing on the inside, on internal organs.
02:20It can be very painful for some people.
02:23People have lost limbs and have died as a result of this condition.
02:27There's no cure for neurofibromatosis,
02:29and the only treatment is surgical treatment.
02:32Neurofibromatosis only affects one in every 3,000 people in the world.
02:38I started to notice differences in my body
02:40with early puberty in grade 2, grade 3.
02:42I had a lot of bullying because I had some bumps.
02:46Lucky start.
02:48I'm ahead of you.
02:50I had a few good friends, but it was very difficult.
02:53I'd had a few dates, but I wasn't very successful.
02:56Until we met, I always felt like I'd probably end up being single.
03:00I started fearing dying alone.
03:03Pretty handsome there, Tim.
03:05Thank you.
03:06You have hair on your head too.
03:08There's no sign of that bump at that point.
03:10Oh yeah, that's true.
03:12This is when I was in high school,
03:14and this is when I first started noticing
03:16the neurofibromatosis tumors,
03:18and they came out on my chin, on this one here.
03:22Do you remember this one?
03:24Or those flowers?
03:26Is that the flowers I sent you, the first set?
03:28The first flowers.
03:30With the puppy that was attached
03:32that looked like my old Caleb.
03:34We have known each other since August 2010.
03:38Yeah, snow, great.
03:40It's a little bit gray now, but not that much.
03:43This is our wedding.
03:45Look at the smiles. It was a beautiful day.
03:47I think that's the picture I used
03:49in my profile picture on Facebook.
03:51I received some information from a colleague of mine
03:54who tried to set me up once before.
03:56This was one of our first vacations together.
03:58Mm-hmm.
04:00She came running into my office and she said,
04:03Oh, I need to talk to you.
04:05There's this man, and he's got the same thing you do.
04:07I don't know, I wrote it down here.
04:09This picture was taken moments after I proposed.
04:11Yes.
04:13In Cathedral Grove.
04:15What a beautiful picture.
04:17Yeah, good memories.
04:19Good memories.
04:21First time you've worn it this spring.
04:23Yeah.
04:25It's our anniversary coming up.
04:27Where is it?
04:29Here, this is...
04:31That's why we're here.
04:33Okay.
04:35Having found one another,
04:37the couple set out to face
04:39the harsh reality of living
04:41with a visible difference.
04:43I receive stares a lot
04:45when I'm at the grocery store
04:47or out in public.
04:49If I sit down beside somebody,
04:51they'll get up and they'll move.
04:53I've had people surround me
04:55and pray for me because, again,
04:57I don't look like everybody else.
04:59They're staring at me and sort of looking
05:01and they might think,
05:03oh, he's got a big bubble on his head,
05:05or he's got a big bump on his head.
05:07What is this Just Ask business?
05:09Thank you for asking.
05:11It's about neurofibromatosis.
05:13What is that?
05:15Neurofibromatosis.
05:17Well, no one would know what it is.
05:19No one would know,
05:21but they have to know that you are awesome.
05:23Thanks, pal.
05:25We're regular people just like you.
05:27There you go, Jim.
05:29Up over there.
05:31I'm going to steal some of your sausage.
05:33Hey, hey, hey.
05:35Just one little bit.
05:37No respect.
05:39One time in a coffee lineup,
05:41this lady approached me and said,
05:43I'm a nurse and I know exactly what you have.
05:45And
05:47just so you know, when you die
05:49and get in front of God,
05:51you'll be beautiful. You won't have any bumps at all
05:53and you'll be beautiful.
05:55And I said, well, I think I'm pretty beautiful right now.
05:57And she shook her head and said,
05:59no, no, you're not.
06:01And walked away.
06:03I wish I'd been there.
06:05She's the most beautiful person I've ever seen.
06:07Thank you.
06:09When I saw that picture of you with those eyes and that smile,
06:11I tell you.
06:13That's what got you?
06:15That's what got me.
06:17I love looking into your eyes.
06:19Thank you.
06:21What makes us strong
06:23is sharing her story
06:25and the way she handles when people ask questions.
06:27The future holds for us
06:29just wonderful things.
06:31We're doing so much, again,
06:33to spread awareness of neurofibromatosis
06:35and support individuals and families with it.
06:37But also as a couple,
06:39to travel and get involved
06:41in our community
06:43and continue with our activities
06:45and what we love to do.
06:47We always like to say, we have NF, but it doesn't have us.
06:49We make the best of it
06:51because we're born, right?
06:53This is what you're living with.
06:57Like Tim and Gail,
06:59our next couple also get plenty
07:01of attention when they're out
07:03due to the rare condition they were both born with.
07:11The king is awake, baby.
07:15What you cooking?
07:17French toast
07:19and sausage.
07:21Just like I like it.
07:25Can't wait to eat.
07:27My name is Deja.
07:29I'm 27 years old
07:31and I am from Philadelphia, Pennsylvania.
07:33My name is Antoine.
07:35I am 30 years old
07:37and I'm from Washington, D.C.
07:43Deja and Antoine
07:45have osteogenesis imperfecta,
07:47a rare condition
07:49that causes bones to become brittle
07:51and break easily.
07:53And we both have two different types.
07:55Deja has type 3
07:57and I have type 2.
07:59My type is more severe than hers.
08:01We depend
08:03on our wheelchairs.
08:05These wheels don't take us far. Relax.
08:09So, we met
08:11through my older sister.
08:13She ran into me on the bus.
08:15She called me.
08:17She told me she met someone
08:19that had OI.
08:21He gave off the impression
08:23that he was the stuff.
08:27That was in 2015.
08:29We were messaging
08:31every day. Like every day
08:33all day.
08:35We met each other in person.
08:37After seven years, we never met.
08:39Which is crazy.
08:41We met for the first time finally.
08:43She spent the whole weekend with me.
08:45We went out to dinner and
08:47she didn't know what I had planned for her.
08:49But the whole plan was to ask her
08:51to be my girlfriend.
08:53And I surprised her.
08:55He got me flowers.
08:57She got emotional but she said yes.
08:59So we've been together ever since then.
09:01We're not with each other because of our condition
09:03but us having the same thing
09:05is like a bonus
09:07because we can really
09:09understand each other.
09:11We make it work.
09:13Like a power couple.
09:15This is Antoine.
09:17I break his stuff up
09:19because he's spoiled.
09:21Growing up with OI, there were some
09:23challenges because of
09:25our condition.
09:27The more frustrating thing about
09:29our condition is when we do
09:31have to go through a break.
09:33My bones kept breaking
09:35so many times.
09:37I always had to go to the doctors.
09:39I missed a lot of days of school.
09:41I also too had a lot of breaks.
09:43My bones are more fragile
09:45when I was younger.
09:47I would break at least
09:49no joke, maybe like once a week.
09:51I think I've broken
09:53my bones around 400 times.
09:55I would say maybe 200.
09:57We have both
09:59fractured ribs
10:01just by sneezing before.
10:03So either of us
10:05have some type of coughing fit or
10:07we pause
10:09and look at each other and be like,
10:11Are you okay? Are you alright?
10:13It's crazy.
10:15It's painful.
10:17Very painful.
10:19My type, I'm able to wear cast
10:21but Antoine
10:23is not. In order to put that
10:25on, I do have
10:27to be put to sleep.
10:29Surprisingly, I have never
10:31had any surgeries
10:33so I am thankful for that.
10:35I just have to be home, stay home
10:37for a couple of weeks, stay still.
10:39We are very understanding
10:41like when we are hurt
10:43we know how to handle each other
10:45pretty well when
10:47we need to help each other.
10:49Finding such an incredible bond
10:51the pair took to TikTok.
10:53Hey guys, I'm
10:55Deja the Beauty
10:57and I'm Antoine
10:59the O.
11:01I've had a TikTok
11:03since 2020
11:05and then when I got with Antoine
11:07and started posting with him
11:09people would love it.
11:11Everyone kept asking me to make my own
11:13so I said okay, I'm going to try it out.
11:15I went on there and I made a video
11:17and it went viral.
11:19My first video just went crazy.
11:21The comments
11:23are going at it like a champ.
11:25People say crazy things.
11:27A lot of people, they call us
11:29Mr. and Mrs. Potato Head.
11:32They talk about my fingers
11:34like, you know, horsefly fingers
11:36and all that.
11:41And my voice, they talk about my voice.
11:43They ask if I have a voice filter.
11:45I look different. I talk different.
11:47I'm built different.
11:49It says I thought this was
11:51a bug on his back.
11:53So he's responding to that comment.
11:55He thought I was a bug on his back.
11:57He's my cousin.
11:59And if you think
12:01I'm ugly or you think I'm this
12:03that's your opinion.
12:05I don't care. I'm going to sleep
12:07well tonight.
12:09I don't have to ever meet you.
12:11We won't be on the same level.
12:13I'll be up here.
12:15You'll be down there.
12:17All that negative comments just go out the window.
12:19I just make a joke of it
12:21and let people know that you're not hurting me.
12:23I know you talk about me.
12:25Keep talking.
12:27Today is a special day because
12:29it is our anniversary.
12:31One year and four months
12:33together.
12:35We are celebrating today
12:37by going to
12:39like a little cafe spot.
12:41I'm dressing up.
12:43We have outfits.
12:45And when we dress up
12:47everybody can move out the way.
12:49The spotlight is on us.
12:51Hoping not to whip through.
12:53The king and queen
12:55is here.
12:57Ew.
12:59People stare.
13:01People say, oh god bless you.
13:03I don't really pay attention
13:05to if someone's
13:07looking at me. Only if I catch them.
13:09I feel them too.
13:11I look right back at them.
13:13I know people looking now.
13:15If you don't like talking to people
13:17really in public
13:19I would talk to you.
13:21I just want people to know that we're all different
13:23whether you know it or not.
13:25You ain't gonna be talking about me.
13:27I would say
13:29worry about yourself.
13:31Everyone is different.
13:33Everyone is disabled
13:35to do something in life.
13:37Don't judge no one.
13:39Don't listen to what people tell you.
13:41Especially if it's negative.
13:43Because we are able to do something.
13:45We're able to do
13:47a lot of things that other people
13:49are not able to do.
13:51The O.I. does not
13:53control me.
13:55I'm still doing everything
13:57that I want to do.
13:59And everything that I know I can do.
14:01My confidence
14:03has grown
14:05since we've been together.
14:07I think this really boosts it up more.
14:11It really shows me
14:13that I can find
14:15true love.
14:17Ah!
14:19Ah!
14:21I'm living life.
14:23This is living life.
14:25Yes!
14:27Our next
14:29romance is also the result
14:31of meeting through their shared experience
14:33of living with one of the toughest
14:35conditions. Epidermolysis
14:37bullosa or EB.
14:39What I do to keep my skin
14:41safe for today is just trying to scratch.
14:43Trying not to have any sort of friction
14:45or bump myself accidentally.
14:47Last time that we were together
14:49I came to visit Ariana for her 21st
14:51birthday and I just came back now
14:53for her graduation.
14:55Today I'm feeling really excited to see my
14:57boyfriend and hang out and make more
14:59memories and experience
15:01Los Angeles together.
15:03Hi!
15:05My name is Ariana.
15:07My name is Victor. And we both have
15:09epidermolysis bullosa which means our
15:11skin is very fragile. EB is a
15:13rare genetic skin disorder. It means that
15:15our skin is really fragile due to
15:17missing protein and our skin is like
15:19paper and it easily shears with
15:21the slightest friction.
15:23Victor and I met through Facebook.
15:25The first thing I noticed and liked about Ariana
15:27was her confidence. She's comfortable
15:29in her body and she wants to show off her skin
15:31and she's not scared of what
15:33others may think. So I think EB
15:35has definitely brought us together.
15:37Sharing the same condition with
15:39Victor has a lot of positives.
15:41It allows us to understand each other more.
15:43I think the only challenge really is
15:45that it's difficult to see her
15:47in pain and not be able to help her
15:49as best as I can
15:51since I am long distance.
15:53But the couple have faced negativity online
15:55because of their union.
15:57People judge our looks. They say
15:59that what are we doing to each other
16:01that we shouldn't be together. I still
16:03choose to post whatever we want
16:05and to share our relationship.
16:07Hey guys! Welcome back to my channel
16:09Living With Ari. If you're new here,
16:11my name is Ariana and
16:13my special guest,
16:15my mans.
16:17So today, we are
16:19heading out to a museum
16:21called Museum of Love.
16:23We want to go out.
16:25We have to plan out our day
16:27accordingly to how we're feeling
16:29and how our pain is that day
16:31until we live day by day.
16:33Your courage,
16:35your adversity,
16:37the way you share your body positivity
16:39is a big strength as well.
16:41Your three strengths are
16:43you're motivated,
16:45you are creative,
16:47and you're caring.
16:49Are you ready for some ice cream?
16:51I'm ready for some ice cream.
16:57Do you guys have the rum flavor?
17:01Now that you're done with college,
17:03how do you feel about it?
17:05Honestly, it's exciting that I graduated college.
17:07Finally.
17:09Now I get to focus on myself,
17:11my platforms and my health
17:13and actually work.
17:15I think for the future, we hope to expand
17:17our audience, share more awareness
17:19of our condition and also get to know
17:21each other more in person and see
17:23if we can live together or at least
17:25in the same state. Experience more things
17:27together and make more memories.
17:31Our next power couple
17:33not only live with a rare condition,
17:35they both challenge the norms
17:37of what someone can do with it
17:39in the gym.
18:05I guess I'm proud
18:07of what we've accomplished.
18:13I was diagnosed with cerebral
18:15palsy at the age of
18:1711 months old.
18:21I was diagnosed with scoliosis
18:23at the age of 12.
18:27I was diagnosed
18:29with my cerebral
18:31palsy at birth.
18:33Cerebral palsy
18:35is a group of disorders that affects
18:37a person's ability to move
18:39and maintain balance.
18:41It is caused by abnormal brain development
18:43or damage and affects
18:45how a person can control their muscles.
18:49I did have a lot of bullying
18:51in my life
18:53and
18:55it was not good, I'm not going to lie.
18:57I had got bullied too
18:59because the way that I
19:01think, saying that I
19:03think like, I'm wrong.
19:09How did you guys first meet?
19:11Oh wow.
19:13We first met at
19:15Houston Community College
19:17at downtown campus.
19:19We've been at the center since 1993.
19:21Yeah.
19:25My grandmother
19:27had passed away and she told me
19:29that I needed to go ahead
19:31and make something of my life, do something
19:33better, improve your life,
19:35improve your health and everything.
19:37Whether it be a professional bodybuilder
19:39or a professional wrestler.
19:41But I said that wrestling
19:43was a little bit too dangerous.
19:45So I chose bodybuilding.
19:49I went to Tina
19:51and I asked her,
19:53what do you want to become a bodybuilder?
19:55I am their fitness trainer,
19:57coach and mentor
19:59and friend and family.
20:01To add to it.
20:03I'm the team motivator.
20:05I'm the team hype man.
20:07We come together as a team.
20:11I had seen him in the gym before.
20:13He always had a happy-go-lucky attitude
20:15and when he came to me
20:17and said, I want to be a bodybuilder,
20:19I literally just kind of had to take
20:21a moment and say,
20:23okay, are you serious?
20:25Well, if you're joking or not.
20:27I said, yes, I am. I'm very, very serious
20:29about this.
20:35And I sat and talked with him
20:37and he had this intensity behind his eyes
20:39and he had this seriousness
20:41about himself and he's like,
20:43I really want to do a bodybuilding show.
20:45I'm like, okay.
20:47Like, seriously.
20:49Like, let's go.
20:52Next thing I know, Tina's
20:54on the computer every morning
20:56Googling, researching cerebral palsy,
20:58scoliosis. I'm like,
21:00what's going on? She's like,
21:02I'm going to do it. I'm like, are you serious?
21:04She's like, yeah, I'm going to train Wade.
21:06We're going to the gym with her
21:08three days a week at first.
21:10Then we got it done.
21:12I'm a bodybuilder now.
21:15After Wade won that first bodybuilding show,
21:17BJ, she came up to Tina
21:19and said, Tina, I'm going to
21:21allow you to train me.
21:23And after
21:25the second year,
21:27I had lost so much weight
21:29and now
21:31it's like no time for me now.
21:39Oh my God.
21:41Tina called
21:43and I knew
21:45we would know what time
21:47it was up and what time
21:49it was down.
22:05I've been training Wade for four years
22:07and BJ for three years now.
22:09Their level of confidence
22:11has just risen.
22:13It's a beautiful thing.
22:15That's it.
22:17Oh, wait, wait, finish it up.
22:23Some of Wade and BJ's
22:25weaknesses are
22:27still with their leg
22:29coordination. Walking and
22:31stepping, we're constantly
22:33working on that. In the beginning,
22:35his hands were so
22:37non-responsive to the weights
22:39and he couldn't really hold on that well.
22:41But over time, he's built up his strength
22:43and now it's some of his best lifts
22:45where he can really hold on.
22:47Well, bench pressing,
22:49I can actually
22:51max
22:53120 pounds.
22:59So well where
23:01Wade is now capable of using a lot
23:03of the machines on his own
23:05and then with BJ, I still have to
23:07adapt some of the movements for her.
23:09But we've gained confidence
23:11in what we're doing. We do push-ups
23:13now on the floor and sometimes
23:15I'll just leave her there and say,
23:17OK, BJ, let's get up.
23:19And she's like, well, you need to help me. I'm like, no, ma'am.
23:21What if I wasn't there?
23:23What if I wasn't with you?
23:31Having been inspired by her work
23:33with the couple, Tina decided
23:35she wanted to help more people.
23:37My company called Normal to Be Fit
23:39and started a non-profit arm.
23:41And what we do is we
23:43volunteer free of charge
23:45service for anything
23:47and everything in the gym.
23:49I'm volunteering with Normal to Be Fit
23:51doing what I can do.
23:53I'm spreading awareness out
23:55for cerebral palsy and scoliosis
23:57and other disabilities.
23:59And this time, BJ and Wade
24:01were able to become more
24:03than just the trainees.
24:05Sitting back and
24:09seeing the pride
24:11on Wade's face
24:13when he's helping someone
24:15else,
24:17he's like,
24:19I helped them, you know?
24:21He's like, I knew
24:23what to say. I could help them.
24:29And I'm just
24:31like, wow.
24:33You know, and BJ's
24:35talking to one of the ladies
24:37in the wheelchair and she's, you know,
24:39depressed and she doesn't want to work out.
24:41And BJ's like, come on, honey, I'm going to do it
24:43with you. Here, you put it around my leg
24:45and I'm going to hold it for you.
24:53I help, I assist
24:55people with different machines
24:57and I'm just like an assistant.
24:59And also I
25:01help too because I
25:03give them motivation and
25:05sometimes they don't
25:07feel like they can do it.
25:09And I'll be like,
25:11no, forgive me. I can
25:13do it. You can do it too. Come on.
25:15We're going to do it together.
25:17My actual main goal is to two times
25:19become a personal trainer myself.
25:21Eventually.
25:23Nothing's ever easy.
25:25We may
25:27make it look easy,
25:29but it's not easy.
25:35Look at that smile.
25:37Look at that smile.
25:39Switch it. Switch it. Boom.
25:41Boom. And...
25:43There's no stopping this.
25:45There's no stopping this inspiration.
25:47It's meant to be.
25:49It's meant to be.
25:51Can we do one of those?
25:53Can we do one where everyone's making them up?
25:55Jonathan, put your arms up.
25:57I see you.
25:59Don't block no one's face.
26:03I'm proud of Wayne
26:05because he
26:07overcomes a lot of things.
26:09I have seen him
26:11get a lot
26:13stronger and
26:15I am standing by him.
26:21I'm proud of my wife.
26:23She's accomplished a lot.
26:25The weight loss that she's doing,
26:27getting on the bodybuilding stage
26:29is a big deal for her,
26:31but we did it.
26:33Blessed to have her in my life right now.
26:35I don't see
26:37Wade and BJ having
26:39scoliosis and cerebral palsy
26:41holding them back from doing anything at all.
26:43I don't see that.
26:45They don't let it.
26:47We're going to make it happen.
26:49It's going to be big.
26:51It's going to be bigger than where we are right now.
26:53Overcoming the difficulties
26:55that come with a rare disease is one thing
26:57but expanding your family
26:59requires an additional layer
27:01of courage to take on
27:03and that's exactly what Faye and Stevie
27:05have done.
27:07Is it the hair?
27:09I don't need it.
27:11That's nasty.
27:13All gone.
27:15Gone. All gone.
27:17It's gone.
27:19High five.
27:21Peace.
27:23Rowan's
27:25definitely a little character.
27:27He's definitely full of energy.
27:29Very cheeky.
27:31Which one
27:33should we read?
27:35Neither, of course.
27:37He's very quick at learning
27:39and he's
27:41starting to speak more
27:43and repeating things.
27:45Wow.
27:47Good boy.
27:49More?
27:51Rowan's going to be 18 months
27:53next month. He's a very
27:55outgoing, funny
27:57little boy.
27:59He's definitely got your look in his eye.
28:01Yeah, he's definitely got your
28:03cheekiness.
28:05He's a real mixture of both of us.
28:07Parents Faye and Stevie were both
28:09born with different conditions
28:11which affect their muscles and strength.
28:13I was diagnosed with
28:15SMA when I was around 18
28:17of some sort.
28:19I would describe SMA
28:21as a weakness.
28:23All of my body is
28:25quite weak.
28:27My arms, my neck muscles,
28:29even my breathing.
28:31And I can't walk at all.
28:33DMD stands for
28:35Duchenne Muscular Dystrophy
28:37and it's a muscle-wasting condition
28:39that affects every organ.
28:41So the difference between
28:43our disabilities is
28:45DMD is more progressive
28:47than SMA.
28:49Yeah, Mario's working tonight.
28:51And then it's Bobby in the morning.
28:53And then in the morning
28:55I've got to go to that pantry.
28:57We met around
28:59about 11 years ago
29:01and we were playing
29:03power chair football.
29:05Stevie was on the opposing team
29:07to me and I just seen him across
29:09the sports hall and I was like, oh he's a bit of alright.
29:11Well we started off as friends
29:13didn't we?
29:15And now what, we've been married five years?
29:17Now I'm stuck with him.
29:19I definitely always wanted children
29:21but being with Faye I never realised
29:23that that would have been really possible.
29:25She's very determined
29:27and she's got her mind set on something
29:29and she normally gets it.
29:33I read an article about someone else
29:35with SMA and she
29:37carried successfully and delivered
29:39her child, her little girl.
29:41I want to be a mum.
29:43During pregnancy, yeah it was
29:45a little bit scary because knowing the risk
29:47of having a baby and when Faye
29:49went down for the caesarean
29:51that was probably the worst weight of my life
29:53really.
29:55Getting the news that they were
29:57both okay was
29:59where I felt on top of the world really.
30:01When was born? It was the 11th of
30:03October 2017.
30:05Life after Rowan
30:07was a little bit of adjustment
30:09but after a day or two it just felt like
30:11he'd been there for years.
30:13It just felt really natural.
30:15Oh hello.
30:19The chances of Rowan getting our
30:21disabilities, it definitely played on my mind
30:23but we had advice from
30:25someone and they said that he
30:27wouldn't get our disabilities.
30:29The only thing he did in heaven
30:31was to get a cochlear implant
30:33The only thing he did inherit
30:35was the SMA gene but
30:37that would affect if he had children
30:39but he would get
30:41tested for that.
30:43Do you want some dinner?
30:45Are you and your bug?
30:47We remain as
30:49independent as possible
30:51with the help of our carers.
30:55Grab the tomatoes
30:57and the cucumbers as well.
30:59Stick it in the bowl.
31:01Rowan look, we're cooking.
31:05You hungry?
31:07Obviously in relation
31:09to them helping Rowan
31:11everything that they do is
31:13instructed by myself or Stevie
31:15and one of us is
31:17always present for
31:19any of his care.
31:21So whether that be changing his bum
31:23or putting him in the bath
31:25or feeding him,
31:27one of us will always be there.
31:29Give him a bit more pasta.
31:35Two minutes, be patient.
31:37You've got to be patient.
31:39That's it.
31:41And then if we put him in his chair first
31:43then we'll get started.
31:45Parenting isn't difficult
31:47because our guys that we have
31:49working for us are all very
31:51understanding and they respect
31:53that.
31:55You okay?
31:57Are you chewing it properly?
31:59Tomato.
32:01Tomato?
32:03Yeah and the other one as well.
32:05We've all got the same.
32:07Just push me forward a little.
32:09Yeah, thank you.
32:11Perfect.
32:13Thank you.
32:17Eat some more.
32:25Good boy, you alright?
32:27Brush your hands off.
32:29Good boy.
32:31The thing that stands out for me most
32:33is when Rowan hurts himself
32:35and we can't pick him up
32:37to sort of hold him.
32:39That's probably the one thing that I wish I could do
32:41but obviously I'm grateful that they can do that for me.
32:43It's your turn.
32:45Can I go?
32:47Do you want to sit here with Daddy?
32:49Shall we go in here?
32:51Little sis, come on.
32:53Uh oh.
32:55Come back you.
32:57The hardest thing for me
32:59with Rowan is being able
33:01to pick him up and hold him tight
33:03and just to let him know
33:05that I'm there for him.
33:07Yeah, that's hard to deal with.
33:09We're going to the farm.
33:11You can't go to the farm without your shoes on.
33:15We're not classed
33:17as a normal human being.
33:19We're not allowed to have children.
33:21Get in the car.
33:23Yeah, they're birdies.
33:27And we're not allowed to be able to drive a car
33:29or own our own house
33:31or work
33:33and that's how I feel that
33:35the public perceive us.
33:37Shall we put your hand strap on?
33:39Oi.
33:41Oh, nearly.
33:43When we're out and about
33:45in the general public
33:47people never think
33:49that we are Rowan's parents.
33:51That's it, good boy.
33:53They always just assume
33:55that whoever's with us is
33:57either his guardian or his mother
33:59or father
34:01and that's quite
34:03upsetting and it annoys
34:05us a little bit, doesn't it?
34:07Yeah, it does.
34:09Because what is normal?
34:11I want people to
34:13watch this and to know
34:15that we are just a nice
34:17family of three and yeah,
34:19we might be on wheelchairs but
34:21we're no different to them.
34:23Hiya, Mr. Goat.
34:25What? Come here.
34:27Stand on here. Say hello, goat.
34:29It's nice to
34:31watch him grow up and
34:33yeah, for him to
34:35accept us as his parents
34:37and that's
34:39heartwarming and that is ultimately
34:41what I wanted when I started
34:43this journey, when I decided I wanted
34:45to be a parent, is
34:47will my child love me like a child
34:49loves any other? And the answer is yes.
34:53We love him
34:55so much
34:57and he returns it
34:59and gives that love back to us
35:01and it makes everything worthwhile
35:03and it made all
35:05of the pain from pregnancy worthwhile
35:07and yeah,
35:09it's, yeah,
35:11he's, I'm proud
35:13to be his mum and
35:15I'm proud of who he's
35:17turning to be.
35:21He's off. He's off.
35:23Rowan, wait for us.
35:25You're too fast.
35:27Oh, he's after the bird.
35:29Our next story is about a couple
35:31who decided that their experience
35:33of living with their condition would
35:35make them the perfect parents
35:37to their adopted daughter.
35:39We are pretty different
35:41than other families, but
35:43a lot the same.
35:45But the difference is, you can see,
35:47we use wheelchairs to get around.
35:49Our house is different.
35:55Thank you, girl.
35:57Thank you.
35:59Good girl. So we have different
36:01challenges in our life, but
36:03we are also just
36:05a lot of like, like your typical family
36:07as well.
36:11It's really,
36:13really easy to break a bone.
36:15You could just, you can sneeze and you can
36:17break a bone.
36:19I'm going to see this
36:21bird.
36:23I've broken over 200 bones.
36:25Hey, I can see the neighbour.
36:27Oh, jeez, please.
36:29They have a white lamp. That's cool.
36:31Oh, and they have a camera.
36:33Between them, the family have
36:35broken over 600 bones
36:37due to a rare condition
36:39they have, called osteogenesis
36:41imperfecta, which makes
36:43their bones as fragile as glass.
36:45OI, or osteogenesis imperfecta,
36:47is a brittle bone
36:49disease disorder. It's genetic.
36:51A genetic
36:53mutation that obviously
36:55is pretty painful.
36:57And that is why
36:59we're smaller than the typical
37:01person and, of course,
37:03use the wheelchairs. And you can see up on
37:05the range here,
37:07up here I have two mirrors so that I
37:09can see into my pots because
37:11if I have a pot of boiling water, I can't,
37:13I'm so low that I can't see into it.
37:15So those mirrors help me do that, which is
37:17neat.
37:21Get close. Close it, bro.
37:23Yes! Thank you.
37:25Good girl.
37:27Good girl. There are different
37:29types of OI. I think, now,
37:31say there's six
37:33different types.
37:35Even more, I think there might be even more.
37:37I think we both have what's called
37:39type three, which means you're
37:41short statured and
37:43have kind of a barrel chest and
37:45very brittle bones.
37:47And I think that
37:49Anissi has a
37:51similar type.
37:53Okay.
37:55OI affects
37:57me on a daily basis because
37:59I break a lot, so
38:01and that's not normal.
38:03And
38:05so like
38:07I can't really do a lot of things.
38:09I like to paint
38:11a lot. I can just
38:13express my feelings through my art.
38:15I just feel really happy
38:17and peaceful.
38:19You do wish that you were
38:21a walker.
38:23And
38:27I guess I just wish
38:29that a lot too.
38:33But I'm
38:35happy about who I am.
38:37Anissi was adopted
38:39by her parents when she was seven years
38:41old from her birth country,
38:43Belize. When
38:45Chris and I got married, we always kind of
38:47knew that we wanted to
38:49adopt a little girl
38:51that had OI
38:53so that we can share some of our experience
38:55and knowledge with that child
38:57and make it maybe easier for them.
38:59The process is very long.
39:01A lot of paperwork, of course.
39:03And finally they said
39:05you can come down and meet Anissi.
39:07Drove straight to see her and she was sitting
39:09outside her little dormitory in the
39:11children's home and she was sitting there in her
39:13stroller with her
39:15backpack and it was sitting right next to her
39:17and it was just an incredible moment
39:19because I'd always wanted to be a mother
39:21and we'd always wanted to be parents
39:23and Chris and I knew
39:25at that second that that was our dream.
39:27Chris and I knew at that second that that was our
39:29daughter and it was totally meant to be that way.
39:31And again in our living room, these
39:33are three paintings that Anissi
39:35did. The elephant over there is
39:37beautiful, one of my favorites.
39:39And the giraffe.
39:41And here is
39:43in Miami.
39:45We waited two and a half years
39:47to adopt Anissi.
39:51It's the greatest thing that
39:53in our life, of course, that we've ever done.
39:55And we share a special
39:57bond because we're a family
39:59because we love each other but also because we
40:01all three have a why.
40:03And we
40:05go through the same thing. We know exactly
40:07what it's like when something
40:09happens or the fears that
40:11are associated with it
40:13and that is extremely important
40:15and comforting at the same time.
40:17Oh my god, I know.
40:19Married for 11 years, Chris and
40:21Lisa have known each other since
40:23they were babies.
40:25We have known each other since Chris
40:27was born because I'm a little bit older
40:29than he is.
40:31And he moved
40:33away and we kind of lost contact
40:35for a while and then
40:37about 12 or 13 years ago,
40:3912 years ago, we
40:41contacted each other
40:43again online and
40:45started talking and fell in love and eventually
40:47Chris moved out here
40:49to be with me
40:51in Colorado.
40:53I attend
40:55a normal public high school
40:57just like any normal person
40:59and
41:01nobody sees me differently
41:03and
41:05everybody loves to help me out and
41:07I think that's amazing.
41:09I could do that over
41:11like roasted vegetables, like roasted carrots.
41:13That would be really good.
41:15Our disability has opened up many doors
41:17for us. Anusi was an
41:19ambassador to Children's Hospital
41:21and she painted
41:23a painting for them to
41:25auction off at their gala
41:27and that night we all went and we were
41:29sitting at the gala and they started the bidding
41:31for her painting and it went
41:33for $50,000 that night.
41:35She raised $50,000 and then
41:37the auctioneer said, is there anyone that
41:39will match that for her to do a second
41:41painting and someone raised their hand.
41:43Makes me cry.
41:45And that is the one that sold,
41:47the ones that sold at Children's Hospital
41:49for $50,000.
41:51That's just a print of course.
41:53As much as we are proud of those big moments,
41:57we're proud of the little things.
42:01Two, for instance,
42:03Anusi went to prom
42:05last week
42:07and she was nervous about it and
42:09she was nervous
42:11because she was going to be the only girl there
42:13that was different, that was losing a chair.
42:15But
42:17she didn't let it stop her and
42:19she had a great time and those things.
42:23Neither Lisa or I
42:25went to prom when we were young.
42:27Yeah, she just had so much
42:29more confidence and we're so proud of her.
42:37Yay! Thank you!
42:39Anusi's getting where she doesn't
42:41break as much either. I'm pretty much just as strong
42:43as you. With both hands.
42:45Oh my gosh, that's so not true.
42:47But we're going to go with that for now.
42:49We're going to do arm wrestle. Oh my gosh.
42:55I don't know if I can imagine
42:57life without it. I think
42:59it's just been a part of me for so
43:01long it's hard to imagine
43:03what it would be like. Maybe when I was younger I used
43:05to dream or think about what it
43:07would be like to walk or to have
43:09average experiences or typical
43:11experiences but
43:13now I mean
43:15I wouldn't trade it because there are so many
43:17wonderful things that have happened.
43:19Chris is in my life.
43:21Anusi is in my life.
43:23And of course those two things I would never trade.
43:27Yeah, my parents
43:29they always say just
43:31be yourself. Be your
43:33funny self
43:35and don't let people
43:37get in the way
43:39of who you are.
43:41This is our
43:43life. This is what we have. We have to
43:45make the best of it and think about
43:47all the positive stuff because there's a lot of positive
43:49stuff.
43:51Our final couple
43:53have both been able to achieve
43:55amazing things in life
43:57because of the things that make them different
43:59from everyone else.
44:03We live here
44:05in Clarglen. As you can see around
44:07you with the mountains and everything, it's fantastic.
44:09Very nice town. It's quiet.
44:15What's up everybody? Maybe don't
44:17groan. My name is Maddie and I'm
44:19a member of the Canadian Paralympic
44:21track and field team and I compete
44:23in the event of long jump.
44:25My name is Jordan and I'm an athlete
44:27on the Irish Paralympic team that specializes
44:29in the sport of high jump.
44:31Back in 2019 we were both
44:33at the world championships in
44:35Dubai. I was on Team
44:37Canada obviously and then Jordan was on
44:39Team Ireland. She pretty much
44:41stinted my games if I'm being honest.
44:43Paralympics actually reposted my post
44:45and
44:47she followed me through that post
44:49then sent me a message asking if I
44:51was going to be at the track and she
44:53walked up to me in front of the
44:55entire Irish Paralympic team
44:57at the track
44:59which took a lot of nerves.
45:01To tell you the truth I went over to Dubai to win a medal
45:03and came back with a girlfriend so it was
45:05definitely something that wasn't expected.
45:07I think we have a really nice dynamic
45:09to have a partner
45:11who does exactly the same thing
45:13that you do. They'll understand the
45:15workload and commitment that's involved
45:17in going to these events and becoming
45:19an Olympian or a Paralympian
45:21it's a 24-7 thing.
45:23I'm going to hit the gym.
45:25Here's some weights.
45:27See you later.
45:29Ah!
45:31Love you.
45:33Enjoy.
45:35Unlike all of the people in this video
45:37Maddy wasn't born different.
45:39When I was three years old I
45:41contracted meningococcal disease
45:43with septicemia and gangrene
45:45it's also known as meningitis
45:47and they had to amputate both
45:49of my legs to save my life
45:51and I also had four of my fingers
45:53amputated on my left hand
45:55and I went completely deaf in my left ear.
45:57I was still only given less than
45:592% chance of living because
46:01it's a very progressive disease.
46:03A lot of people that get it don't really
46:05make it past the 24-hour mark.
46:07It's pretty much a miracle
46:09that I'm here today.
46:11When I was growing up
46:13my bones wouldn't
46:15recognize that they had nothing
46:17to grow into.
46:19I do remember getting fitted with my first
46:21pair of prosthetic legs.
46:23For me it was a little bit scary at first
46:25because I had to learn
46:27how to do everything again.
46:29My very first pair of
46:31prosthetic legs,
46:33they were quite heavy and they were quite stiff.
46:35They were kind of hard to walk around
46:37and I won't lie. Now the technology
46:39is amazing, I mean my
46:41prosthetics are nice and light, they're comfortable.
46:43My ones that I use for
46:45training, they're even lighter
46:47and they allow me to move freely.
46:51It was a bit difficult growing up
46:53when I was trying to get involved in sports
46:55because it was something that was
46:57foreign to them. They had never had
46:59an athlete before come to them that had
47:01a disability. There was multiple
47:03clubs that turned me away because they
47:05didn't want to have me there
47:07because maybe I was a liability
47:09to them. I wish people
47:11would sometimes see us first
47:13as people rather than people
47:15who have disabilities.
47:17Hey.
47:19Hello.
47:21What is up?
47:23I have a coffee for you.
47:25You better have a coffee for me.
47:27That was a crack.
47:29From a very young age I always
47:31knew death. I was different from
47:33everybody else. It was something that happened
47:35at birth. It's called amniotic
47:37band syndrome where the umbilical
47:39cord wrapped around my elbow
47:41restricted the blood flow which
47:43therefore resulted in the stoppage of growth.
47:45I happen to live in
47:47a relatively rough estate
47:49you could say. There was difficulties
47:51and challenges getting involved
47:53in sporting settings. Getting
47:55strange looks. People saying that you'll
47:57never be able to play basketball
47:59or you'll never be able to do this or that you look
48:01strange. They don't happen anymore
48:03but they used to happen frequently.
48:05How was gym?
48:07Good yeah. It wasn't too bad.
48:09Feeling good. Feeling strong.
48:11Looking forward to getting back now hopefully
48:13in competitions.
48:15In 2015 I became
48:17the first one handed basketball player
48:19to ever represent their country nationally in the world.
48:21Obviously it took a lot of hard
48:23work and dedication to
48:25achieve that goal. I was just so determined
48:27to be able to
48:29prove all the haters
48:31I suppose and doubters wrong
48:33and the people that just didn't believe in me
48:35because there was a lot of people that didn't believe in me at that point.
48:37Living with a
48:39limb difference, the pair have had to
48:41deal with both ignorance and
48:43unwanted pity from the public.
48:45People have asked us in the past if we were
48:47to have kids in the future if they would be
48:49missing their limbs because we are
48:51both missing our limbs. You get
48:53the holy people
48:55that they're like
48:57God bless you.
48:59God bless your spirit. Is your hand
49:01going to grow back now? No it's not.
49:03It's going to grow back.
49:05They're like oh I'll pray
49:07for you. I'm like I mean thanks.
49:09You should pray for yourself buddy.
49:11Oh God.
49:13People just make assumptions that
49:15either myself or Maddy we're good
49:17athletes simply just because of our disability
49:19in our category
49:21but we're good athletes overall
49:23full stop. Do you want to head away now?
49:25Yeah let's go to the track and get warmed up.
49:27We train 12 times a week
49:29it's our routine. We know what
49:31we have to do to try and be the best in the world.
49:33Alright guys
49:37we'll get set up and we will get to it.
49:39You guys start jogging around and start
49:41warming up. So these prosthetics
49:43are my running blades and it
49:45kind of gives me what a real leg
49:47would feel like.
49:49My very
49:51first experience of helping out
49:53an athlete with a disability would have been Jordan.
49:55I had no background in
49:57coaching anybody that would
49:59have had to make adaptations or anything
50:01like that.
50:03Get your toes up, toes up, toes up.
50:05Both of them would pride themselves
50:07as kind of representing Parasport
50:09on a level playing pitch
50:11with able-bodied.
50:13So it's quite inspiring
50:15to see they've all
50:17stopped having to do a double
50:19take. They're all used to her being there now and
50:21I think a lot of them are quite honoured
50:23that they'll see somebody who
50:25doesn't see barriers.
50:31My tattoo says Never Say Can't
50:33and it's above one of my scars that I
50:35had from surgery when I first got meningitis.
50:37Mine are the Olympic rings
50:39as you can see here on my left bicep
50:41and the Paralympic symbol
50:43on my left pec. Only
50:450.001% of the entire
50:47population of the world would get to become
50:49a Paralympian or Olympian.
50:51I think it was only right to
50:53acknowledge the achievement of getting there
50:55by having it on my skin
50:57and with me for the rest of my life.
50:59With all the opportunities
51:01that this sport has given me
51:03I wouldn't change it for the world.
51:05I got to meet Jordan because of this sport
51:07I wouldn't change it for the world.
51:09I absolutely love it.
51:11Do you know a family or couple with an
51:13amazing story like these guys?
51:15If so, get in touch.
51:17And if you enjoyed the video
51:19please like and subscribe.
51:29Thanks for watching!