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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00:00 Living with a rare condition is challenging.
00:03 So is finding love.
00:05 I just seen him across the sports corner, I was like, "Oh, he's a bit of alright."
00:09 But these incredible couples found one another because of what makes them truly unique.
00:15 EB has definitely brought us together.
00:18 Together we have broken over 600 bones.
00:22 Yes, 600.
00:23 Making these couples some of the most inspiring out there.
00:27 As they go through life together, living with some of the rarest and most challenging conditions in the world.
00:35 I was just so determined to be able to prove all the haters wrong.
00:41 So we have known each other since Chris was born.
00:44 Because I'm a little bit older than he is.
00:47 We make it happen. We make it work.
00:50 A power couple.
00:54 Starting with Gail and Tim, whose rare condition is so misunderstood,
00:59 it often causes people to recoil from them in public.
01:03 I've been asked not to swim in swimming pools.
01:05 If I sit down beside somebody, they'll get up and they'll move.
01:08 I've had people surround me and pray for me.
01:11 Gail was born with neurofibromatosis.
01:15 Because I have neurofibromatosis along the top of my gum and along my pockets.
01:21 I've got to be really careful so I have a soft headed toothbrush here.
01:26 Because it bleeds easily, you've got to just not be assertive when brushing your teeth.
01:34 I was born with neurofibromatosis.
01:37 My mother had it and she had seven children and the three youngest of her children had it.
01:43 So it's a genetic condition.
01:45 Tim is what they might call a...
01:47 I'm a mutation.
01:48 Neither of my parents have it.
01:50 50% of new cases of neurofibromatosis are genetic mutations.
01:55 Neurofibromatosis causes tumours to form on nerve tissue.
02:00 The tumours can form anywhere in the nervous system, including the brain and spinal cord.
02:06 Neurofibromatosis can be a very difficult word to say,
02:11 but it can also be a very difficult condition to live with.
02:14 And it varies with different people.
02:16 Some people have these growing on the inside, on internal organs.
02:20 It can be very painful for some people.
02:23 People have lost limbs and have died as a result of this condition.
02:27 There's no cure for neurofibromatosis and the only treatment is surgical treatment.
02:33 Neurofibromatosis only affects one in every 3,000 people in the world.
02:38 I started to notice differences in my body with early puberty in grade 2, grade 3.
02:42 I had a lot of bullying because I had some bumps.
02:47 Lucky start.
02:49 I'm ahead of you.
02:50 I had a few good friends, but it was very difficult.
02:53 I'd had a few dates, but I wasn't very successful.
02:56 Until we met, I always felt like I'd probably end up being single.
03:00 I started to fear dying alone.
03:03 Pretty handsome there, Tim.
03:05 Thank you.
03:06 Look at all the hair on your head, too.
03:08 There's no sign of that bump at that point.
03:11 Oh, yeah, that's true.
03:12 This is when I was in high school.
03:14 This is when I first started noticing the neurofibromatosis tumors.
03:18 They came out on my chin, on this one here.
03:22 Do you remember this one?
03:24 Or those flowers?
03:26 Is that the flowers I sent you the first set?
03:28 The first flowers.
03:30 With the puppy that was attached that looked like my old Caleb.
03:34 Tim and I have known each other since August 2010.
03:39 Yeah, no great...
03:41 Yeah, it's a little bit gray now, but not that much.
03:44 This is our wedding. Look at the smiles.
03:46 It was a beautiful day.
03:48 I think that's the picture I used in my profile picture on Facebook.
03:51 I received some information from a colleague of mine
03:55 who tried to set me up once before.
03:57 This was one of our first vacations together.
04:00 She came running into my office and she said,
04:02 "Gail, Gail, I need to talk to you.
04:04 There's this man and he's got the same thing you do."
04:07 I wrote it down here.
04:09 This picture was taken moments after I proposed.
04:12 In Cathedral Grove.
04:14 What a beautiful picture.
04:16 Yeah, good memories.
04:18 Good memories.
04:19 First time you've worn it this spring.
04:21 Yeah.
04:22 It's our anniversary coming up.
04:24 Where is it? Here.
04:26 This is...
04:27 The third day of August.
04:28 I proposed and of course she said yes.
04:31 That's why we're here.
04:33 Okay.
04:34 Having found one another, the couple set out to face
04:37 the harsh reality of living with a visible difference.
04:41 I receive stares a lot.
04:45 When I'm at the grocery store or out in public,
04:48 if I sit down beside somebody, they'll get up and they'll move.
04:51 I've had people surround me and pray for me
04:54 because, again, I don't look like everybody else.
04:56 Mostly I notice the kids staring at me and sort of looking
05:01 at me and they might say, "Oh, he's got a big bubble on his head.
05:04 He's got a big bump on his head."
05:06 What is this Just Ask business?
05:07 Thank you for asking.
05:09 It's about neurofibromatosis.
05:13 What is it?
05:14 Spell neuro, neuro, spell that.
05:15 Neurofibromatosis.
05:17 Well, no one would know what it is, right?
05:19 No one would know, but they have to know that you are awesome.
05:23 Yeah.
05:24 Thanks, pal.
05:25 We're regular people just like you.
05:28 There you go, Tim.
05:30 I'm going to steal some of your sausage.
05:33 Hey, hey, hey.
05:35 Just one little bit.
05:37 No respect.
05:39 One time in a coffee lineup, this lady approached me and said,
05:42 "I'm a nurse and I know exactly what you have.
05:46 And just so you know, when you die and get in front of God,
05:50 you'll be beautiful.
05:52 You won't have any bumps at all and you'll be beautiful."
05:55 And I said, "Well, I think I'm pretty beautiful right now."
05:57 And she shook her head and said, "No, no you're not," and walked away.
06:02 I wish I'd been there because I would have said,
06:04 "No, she's the most beautiful person I've ever seen."
06:06 Thank you.
06:07 Because that's what I--when I saw that picture of you with those eyes
06:10 and that smile, I tell you.
06:12 That's what got you?
06:13 That's what got me.
06:15 I love looking into your eyes.
06:17 Oh, thank you.
06:19 I think what makes us strong and it really builds my love for her
06:23 is sharing her story and the way she handles when people ask questions.
06:28 The future holds for us just wonderful things.
06:32 We're doing so much, again, to spread awareness of neurofibromatosis
06:35 and support individuals and families with it,
06:37 but also as a couple to travel and get involved in our community
06:42 and continue with our activities and what we love to do.
06:46 We always like to say we have NF, but it doesn't have us.
06:49 We make the best of it, and you've got to keep going, right?
06:52 Because this is what you're living with.
06:55 Like Tim and Gail, our next couple also get plenty of attention when they're out
07:03 due to the rare condition they were both born with.
07:06 The king is awake, baby.
07:16 What you cooking?
07:17 French toast and sausage.
07:21 Oh, just like I like it.
07:25 Can't wait to eat.
07:27 My name is Deja.
07:29 I'm 27 years old, and I am from Philadelphia, Pennsylvania.
07:34 My name is Antoine.
07:36 I am 30 years old, and I'm from Washington, D.C.
07:41 Deja and Antoine have osteogenesis imperfecta,
07:48 a rare condition that causes bones to become brittle and break easily.
07:53 And we both have two different types.
07:56 Deja has type 3. I have type 2.
08:00 My type is more severe than hers.
08:02 We depend on our wheelchairs.
08:05 These wheels will take us far. Believe that.
08:08 So we met through my older sister.
08:14 She's the one that sent me on the bus.
08:16 She texted me. She told me she met someone that had OI.
08:22 He gave off the impression that he was the stuff.
08:26 Yeah.
08:28 That was in 2015.
08:31 We were messaging every day, like every day, all day.
08:35 We met each other in person.
08:37 After seven years, we never met.
08:39 After seven years.
08:40 Which is crazy.
08:41 We met for the first time, finally.
08:43 He spent the whole weekend with me.
08:45 We went out to dinner, and she didn't know what I had planned for her.
08:49 But the whole plan was to ask her to be my girlfriend.
08:52 And I surprised her.
08:54 He got me flowers.
08:56 She got emotional, but she said yes.
08:59 So we've been together ever since then.
09:01 We're not with each other because of our condition,
09:04 but us having the same thing is like a bonus,
09:07 because, like, we can really understand each other.
09:11 We make it happen. We make it work.
09:13 Like, a power couple.
09:15 This is Anton. This is for Anton.
09:18 I break his stuff up because he's spoiled.
09:21 Growing up with OI, there were some challenges because of our condition.
09:27 The more frustrating thing about our condition is when we do have to go through a break.
09:34 My bones kept breaking so many times.
09:37 I always had to go to the doctors, and I missed a lot of days of school.
09:41 I also, too, had a lot of breaks.
09:44 My bones are more fragile when I was younger.
09:47 Like, I would break at least--no joke--maybe, like, once a week.
09:52 I think I've broken my bones around 400 times.
09:56 I would say maybe 200.
09:59 We have both fractured ribs just by sneezing before.
10:03 So if either of us have some type of coughing fit or sneezing fit,
10:08 we pause and look at each other and be like, "Are you okay? Are you all right?"
10:14 It's crazy. It's painful. It's very painful.
10:19 My type, I'm able to wear casts, but Anton is not.
10:24 In order to put that on, I do have to be put to sleep.
10:29 Surprisingly, I have never had any surgeries, so I am thankful for that.
10:35 I just have to be home, stay home for a couple weeks, stay still.
10:40 We are very understanding.
10:42 Like, when we are hurt, we know how to handle each other pretty well
10:47 when we need to help each other.
10:49 Finding such an incredible bond, the pair took to TikTok.
10:54 Hey, guys. I'm Deja the Beauty.
10:57 And I'm Antoine the Earth.
11:01 I've had a TikTok since 2020.
11:05 And then when I got with Antoine and started posting with him,
11:09 people would love it.
11:10 Because everyone kept asking me to make my own.
11:13 So I said, "Okay, I'm going to try it out."
11:15 I went on there and I made a video, and it went viral.
11:19 My first video just went crazy.
11:22 The comments are going to end like a champ.
11:25 People say crazy things.
11:27 A lot of people, they call us Mr. and Mrs. Potato Head.
11:32 They talk about my fingers, like, you know, French fry fingers and all that.
11:37 Yo, little fries out here. Y'all can't touch little fries out here.
11:41 And my voice, they talk about my voice. They ask me if I have a voice filter.
11:45 I look different. I talk different. I'm built different.
11:50 It says, "I thought this was a bug on his back."
11:53 So who's responding to that comment?
11:56 I was a bug on his back.
11:58 You should see my cousins.
12:01 And if you think I'm ugly or you think I'm this, that's your opinion.
12:05 I hope you don't care.
12:07 I'm going to sleep well tonight.
12:10 I don't have to ever meet you.
12:12 We won't be on the same level.
12:14 I'll be up here. You'll be down there.
12:17 All that negative comments just go out the window.
12:20 I just make a joke of it and let people know that you're not hurting me.
12:23 You! I know you talk about me. Keep talking.
12:27 So today is a special day because...
12:29 It is our anniversary. One year and four months together.
12:35 We are celebrating today by going to like a little cafe spot.
12:41 I'm dressing up.
12:43 We have outfits.
12:45 And when we dress up, everybody can move out the way.
12:49 The spotlight is on us.
12:51 I'm talking out the real food.
12:53 The king and queen is here.
12:57 Eww.
12:59 People stare.
13:01 People say, "Oh, God bless you."
13:04 I don't really pay attention to if someone's looking at me.
13:08 Only if I catch them.
13:10 I feel them too.
13:12 I look right back at them.
13:14 I know people looking now.
13:16 If you don't like talking to people in public,
13:19 I'm more, I would talk to you.
13:21 I just want people to know that we're all different.
13:23 We're all different.
13:25 So, you ain't gonna be talking about me.
13:28 I would say, worry about yourself.
13:32 Everyone is different.
13:34 Everyone is just able to do something in life.
13:38 Don't judge no one.
13:40 Don't listen to what people tell you.
13:43 Especially if it's negative.
13:45 Because we are able to do something.
13:47 We are able to do a lot of things that other people are not able to do.
13:51 Having OI does not control me.
13:55 I'm still doing everything that I want to do.
13:59 And everything that I know I can do.
14:02 My confidence, yeah, has grown since we've been together.
14:07 I think this is what really boosts it up more.
14:11 And like, you know, what it's told me,
14:15 that I can find true love.
14:18 Ah!
14:20 Yeah.
14:22 Love living life.
14:24 Just living life.
14:26 Yeah.
14:28 Our next romance is also the result
14:32 of meeting through their shared experience
14:34 of living with one of the toughest conditions,
14:37 Epidermolysis Bullosa, or EB.
14:41 What I do to keep my skin safe for today
14:43 is just trying not to scratch,
14:44 trying not to have any sort of friction,
14:46 or bump myself accidentally.
14:48 Last time that we were together,
14:50 I came to visit Ariana for her 21st birthday,
14:53 and I just came back now for her graduation.
14:56 Today I'm feeling really excited to see my boyfriend
14:58 and hang out and make more memories
15:00 and experience Los Angeles together.
15:04 Hi.
15:05 Hi.
15:06 My name is Ariana.
15:07 My name is Victor.
15:08 And we both have Epidermolysis Bullosa,
15:10 which means our skin is very fragile.
15:12 EB is a rare genetic skin disorder.
15:14 It means that our skin is really fragile
15:16 due to missing protein.
15:18 Our skin is like paper,
15:19 and it easily shears with the slightest friction.
15:22 Victor and I met through Facebook.
15:25 The first thing I noticed I liked about Ariana
15:27 was her confidence.
15:28 She's comfortable in her body,
15:29 and she wants to show off her skin,
15:31 and she's not scared of what others may think.
15:34 So I think EB has definitely brought us together.
15:37 Sharing the same condition with Victor
15:39 has a lot of positives.
15:41 It allows us to understand each other more.
15:43 I think the only challenge really is
15:45 that it's difficult to see her in pain
15:48 and not be able to help her as best as I can,
15:51 since I am long distance.
15:53 But the couple have faced negativity online
15:55 because of their union.
15:57 People judge our looks.
15:59 They say that, "What are we doing to each other?"
16:01 That we shouldn't be together.
16:03 But I still choose to post whatever we want
16:06 and to share our relationship.
16:08 Hey guys, welcome back to my channel, Living With Ari.
16:11 If you're new here, my name is Ariana.
16:13 And my special guest.
16:15 Hi.
16:16 My mans.
16:17 [laughs]
16:18 So today we are heading out to a museum
16:21 called Museum of Love.
16:23 We want to go out.
16:26 We have to plan out our day
16:27 accordingly to how we're feeling
16:29 and how our pain is that day.
16:31 And so we live day by day.
16:33 Your courage, your adversity,
16:38 the way you share your body positivity
16:40 is a big strength as well.
16:42 Your three strengths are
16:44 you're motivated,
16:46 you are creative,
16:48 and you're caring.
16:50 So you ready for some ice cream?
16:52 I'm ready for some ice cream.
16:54 Let's go.
16:55 No.
16:58 Do you guys have the rum flavor?
17:00 Flavor?
17:01 Now that you're done with college,
17:04 how do you feel about it?
17:06 Honestly, it's exciting that I graduated college.
17:08 Finally.
17:09 Now I get to focus on myself,
17:11 my platforms, and my health,
17:13 and actually work.
17:15 I think for the future,
17:16 we hope to expand our audience,
17:18 share more awareness of our condition,
17:20 and also get to know each other more in person
17:23 and see if we can live together
17:25 or at least in the same state.
17:26 Experience more things together
17:28 and make more memories.
17:30 Our next power couple
17:32 not only live with a rare condition,
17:35 they both challenge the norms
17:37 of what someone can do with it
17:39 in the gym.
17:40 It was in 2016, 2018,
17:49 came in second place in that one.
17:51 Remember right here?
17:52 That was from my very first competition I've done.
17:56 She won, my wife won her pageant.
17:59 I don't know how I picked that up,
18:01 but it's awesome.
18:03 You're all the pioneers of all of this stuff.
18:05 And like I said, I'm proud of what we've accomplished.
18:09 I was diagnosed with cerebral palsy
18:16 at the age of 11 months old.
18:18 And I was diagnosed with scoliosis
18:23 at the age of 12.
18:26 I was diagnosed with cerebral palsy at birth.
18:31 Cerebral palsy is a group of disorders
18:34 that affects a person's ability to move
18:37 and maintain balance.
18:39 It is caused by abnormal brain development
18:41 or damage,
18:42 and affects how a person can control their muscles.
18:45 I did have a lot of bullying,
18:48 but only in my life.
18:50 And I was diagnosed with cerebral palsy
18:54 at the age of 11 months old.
18:56 I was diagnosed with cerebral palsy
18:58 at the age of 12.
19:00 I was diagnosed with cerebral palsy
19:02 at the age of 12.
19:04 I was diagnosed with cerebral palsy
19:06 at the age of 12.
19:08 I was diagnosed with cerebral palsy
19:10 at the age of 12.
19:12 I was diagnosed with cerebral palsy
19:14 at the age of 12.
19:16 I was diagnosed with cerebral palsy
19:18 at the age of 12.
19:20 I was diagnosed with cerebral palsy
19:22 at the age of 12.
19:24 I was diagnosed with cerebral palsy
19:26 at the age of 12.
19:28 I was diagnosed with cerebral palsy
19:30 at the age of 12.
19:32 I was diagnosed with cerebral palsy
19:34 at the age of 12.
19:36 I was diagnosed with cerebral palsy
19:38 at the age of 12.
19:40 I was diagnosed with cerebral palsy
19:42 at the age of 12.
19:44 I was diagnosed with cerebral palsy
19:46 at the age of 12.
19:48 I was diagnosed with cerebral palsy
19:50 at the age of 12.
19:52 I was diagnosed with cerebral palsy
19:54 at the age of 12.
19:56 I was diagnosed with cerebral palsy
19:58 at the age of 12.
20:00 I was diagnosed with cerebral palsy
20:02 at the age of 12.
20:04 I was diagnosed with cerebral palsy
20:06 at the age of 12.
20:08 I was diagnosed with cerebral palsy
20:10 at the age of 12.
20:12 I was diagnosed with cerebral palsy
20:14 at the age of 12.
20:16 I was diagnosed with cerebral palsy
20:18 at the age of 12.
20:20 I was diagnosed with cerebral palsy
20:22 at the age of 12.
20:24 I was diagnosed with cerebral palsy
20:26 at the age of 12.
20:28 I was diagnosed with cerebral palsy
20:30 at the age of 12.
20:32 I was diagnosed with cerebral palsy
20:34 at the age of 12.
20:36 I was diagnosed with cerebral palsy
20:38 at the age of 12.
20:40 I was diagnosed with cerebral palsy
20:42 at the age of 12.
20:44 I was diagnosed with cerebral palsy
20:46 at the age of 12.
20:48 I was diagnosed with cerebral palsy
20:50 at the age of 12.
20:52 I was diagnosed with cerebral palsy
20:54 at the age of 12.
20:56 I was diagnosed with cerebral palsy
20:58 at the age of 12.
21:00 I was diagnosed with cerebral palsy
21:02 at the age of 12.
21:04 I was diagnosed with cerebral palsy
21:06 at the age of 12.
21:08 I was diagnosed with cerebral palsy
21:10 at the age of 12.
21:12 I was diagnosed with cerebral palsy
21:14 at the age of 12.
21:16 After Wade won that first bodybuilding show,
21:18 BJ, she came up to Tina
21:20 and said, "Tina, I'm going to
21:22 allow you to train me."
21:24 And after
21:26 the second year,
21:28 I had lost so much weight
21:30 and now
21:32 it's like no stopping me now.
21:34 Oh my God.
21:42 Tina didn't call
21:44 but I knew
21:46 you would know what's up
21:48 and what was up and what was down.
21:50 I've been training Wade for four years
22:08 and BJ for three years now.
22:10 Their level of confidence
22:12 has just risen.
22:14 It's a beautiful thing.
22:16 That's it. Oh, oh, wait, wait.
22:18 Finish it up.
22:20 Ah!
22:22 Some of
22:24 Wade and BJ's weaknesses
22:26 are still
22:28 with their leg coordination.
22:30 Walking and stepping,
22:32 we're constantly working on that.
22:34 In the beginning, his hands
22:36 were so non-responsive
22:38 to the weights and he couldn't
22:40 really hold on that well.
22:42 But over time, he's built up his strength
22:44 and now it's some of his best lifts
22:46 where he can really hold on.
22:48 Well, bench pressing, I can ask
22:50 him to max
22:52 120 pounds.
22:54 A little more, a little more.
23:00 So well, where Wade is now
23:02 capable of using a lot of the machines
23:04 on his own and then with BJ,
23:06 I still have to adapt some of the movements
23:08 for her, but
23:10 we've gained confidence in what we're doing.
23:12 We do push-ups now on the
23:14 floor and sometimes I'll just
23:16 leave her there and say, "OK, BJ, let's get up."
23:18 And she's like, "Well, you need
23:20 to help me." I'm like, "No, ma'am.
23:22 What if I wasn't there? What if I wasn't
23:24 with you?"
23:26 BJ, please!
23:28 Mmm!
23:30 Having been
23:32 inspired by her work with the couple,
23:34 Tina decided she wanted
23:36 to help more people.
23:38 My company called Normal to be Fit
23:40 started a non-profit arm
23:42 and what we do is we volunteer
23:44 free of charge
23:46 service for anything and everything
23:48 in the gym.
23:50 I'm volunteering with Normal to be Fit,
23:52 doing what I can do.
23:54 I'm spreading awareness out
23:56 for cerebral palsy and scoliosis and other disabilities.
23:58 And this time,
24:00 BJ and Wade
24:02 were able to become more than
24:04 just the trainees.
24:06 Sitting back and
24:08 seeing the pride
24:12 on Wade's face
24:14 when he's helping someone
24:16 else,
24:18 he's like,
24:20 "I helped them!" You know?
24:22 He's like, "I knew what to
24:24 say. I could help them."
24:30 And I'm just like,
24:32 "Wow!"
24:34 You know? And BJ's
24:36 talking to one of the ladies in the wheelchair
24:38 and she's, you know,
24:40 depressed and she doesn't want to work out.
24:42 And BJ's like, "Come on, honey. I'm going to do it with you.
24:44 Here, you put it around my leg and I'm going to
24:46 hold it for you."
24:48 I help, I assist people
24:56 with the machine
24:58 and I'm just like an assistant.
25:00 And also I help
25:02 too because I give them
25:04 motivation and
25:06 sometimes they don't want to, they don't
25:08 feel like they can do it.
25:10 And I'll be like, "No,
25:12 forgive me. I can do it.
25:14 You can do it too. Come on.
25:16 We can go do it together."
25:18 My actual main goal is to two times become
25:20 a person's parent myself.
25:22 Eventually.
25:24 Nothing's ever easy.
25:26 We may be looking
25:28 easy, but it's not easy.
25:30 Look at that smile.
25:40 Look at that smile. Switch it. Switch it.
25:42 Boom. Boom.
25:44 And...
25:46 There's no stopping this.
25:48 There's no stopping this inspiration.
25:50 It's meant to be. It's meant to be.
25:52 "Yep. Can we do one of those?"
25:54 "Yeah." "Can we do one where everyone's making a motion?"
25:56 "Make a motion.
25:58 Jonathan, put your arms up. I see you."
26:00 "Don't pop no one's face."
26:02 I'm proud of Wayne
26:06 because he overcomes
26:08 a lot of things.
26:10 I have seen him
26:12 get a lot stronger
26:14 and
26:16 I am standing by him.
26:22 I'm proud of my wife.
26:24 She's accomplished a lot.
26:26 The weight loss that she's done,
26:28 getting on the bodybuilding stage is a big deal
26:30 for her, but we did it.
26:32 Blessed to have her in my life right now.
26:34 I don't see Wayne and BJ having
26:38 you know,
26:40 scoliosis and cerebral palsy
26:42 holding them back from doing anything at all.
26:44 I don't see that. "They don't let it."
26:46 We're gonna make it happen. "Yep."
26:48 It's gonna be big. It's gonna be bigger than what we are
26:50 right now. "Yep."
26:52 Overcoming the difficulties that come
26:56 with a rare disease is one thing,
26:58 but expanding your family
27:00 requires an additional layer of
27:02 courage to take on. And that's
27:04 exactly what Faye and Stevie have
27:06 done. "Is it the hair?"
27:08 "Yeah." "No, don't
27:10 need it. That's nasty."
27:12 "All gone."
27:14 "Gone." "Gone."
27:16 "All gone."
27:18 "He's gone. High five."
27:20 "Boom."
27:22 "Rowan's turned into
27:26 definitely a little character.
27:28 He's definitely full of energy.
27:30 Very cheeky."
27:32 "Which one should we read?"
27:34 "Neither."
27:36 "Of course."
27:38 "He's very quick at learning.
27:40 And he's
27:42 starting to speak more and
27:44 repeating things."
27:46 "Wow. Woo, good boy."
27:48 "More?" "Rowan's
27:52 gonna be 18 months next month.
27:54 He's a very
27:56 outgoing, funny little
27:58 boy." "He's definitely got your look
28:00 in his eye." "And yeah,
28:02 he's definitely got your
28:04 cheekiness." "He's a real mixture of both
28:06 of us." "Yeah." Parents Faye
28:08 and Stevie were both born
28:10 with different conditions which affect
28:12 their muscles and strength.
28:14 "I was diagnosed with SMA
28:16 when I was around 18 months old.
28:18 I would describe
28:20 SMA as
28:22 a weakness.
28:24 All of my body is quite weak.
28:26 My arms, my neck
28:28 muscles, even
28:30 my breathing.
28:32 And I can't walk at all."
28:34 "DMD stands for
28:36 Duchenne Muscular Dystrophy.
28:38 It's a muscle wasting condition
28:40 that affects every organ."
28:42 "The difference between our disabilities
28:44 is Stevie's DMD
28:46 is more progressive
28:48 than SMA."
28:50 "Yeah, Mario's working tonight."
28:52 "And then it's Bobby in the morning.
28:54 And then in the morning I've got to go
28:56 to that practice."
28:58 "We met around
29:00 about 11 years ago
29:02 and we were playing
29:04 power chair football.
29:06 Stevie was on the opposing team to me.
29:08 And I'd just seen him across the sports
29:10 corner and I was like, 'Oh, he's a bit of alright.'"
29:12 "Well, we started off as friends, didn't we?"
29:14 "Yeah."
29:16 "Yeah, and now, what, we've been married five years?"
29:18 "Now I'm stuck on him."
29:20 "I definitely always wanted children.
29:22 But being with Faye, I never realised that
29:24 that would have been really possible.
29:26 But she's very determined
29:28 and when she's got her mind set on something
29:30 then she normally gets it, so."
29:32 "I read an article
29:34 about someone else with SMA
29:36 and she carried successfully
29:38 and delivered her child, her little girl.
29:40 It drove me to want to be a mum."
29:42 "During pregnancy,
29:44 yeah, it was a little bit scary
29:46 because knowing the risk, like, having a baby.
29:48 When Faye went down
29:50 for the caesarean,
29:52 that was probably the worst weight of my life, really.
29:54 Getting the news that they were both okay
29:58 was, well, I felt on top
30:00 of the world, really."
30:02 "The one was born, it was the 11th of October 2017."
30:04 "Life after Rowan was,
30:06 it was a little bit of adjustment,
30:08 but after a day or two,
30:10 it just felt like he'd been there for years.
30:12 It just felt really natural."
30:14 "Oh, hello."
30:16 "The chances of Rowan
30:18 getting our disabilities,
30:20 it definitely played on my mind,
30:22 but we had advice from someone
30:24 and they said that he wouldn't get our disabilities.
30:26 The only thing that we could do
30:28 was to get him to go to school
30:30 and get him to go to school
30:32 and they said that he wouldn't get our disabilities.
30:34 The only thing he did inherit
30:36 was the SMA gene,
30:38 but that would affect if he had children.
30:40 But he would get tested for that."
30:42 "Do you want some dinner?
30:44 Are you on your bug?
30:46 Oh."
30:48 "We remain as independent
30:50 as possible
30:52 with the help of our carers."
30:54 "The tomatoes and the cucumbers
30:58 as well.
31:00 Look,
31:02 we're cooking."
31:04 "You hungry?"
31:06 "Obviously,
31:08 in relation to them
31:10 helping Rowan,
31:12 everything that they do is
31:14 instructed by myself or Stevie
31:16 and one of us is always
31:18 present for any of
31:20 his care. So, whether
31:22 that be changing his bum
31:24 or putting him in the bath
31:26 or feeding him, one of us
31:28 will always be there.
31:30 Give him a bit more pasta.
31:32 I know it's coming,
31:36 two minutes, be patient, you've got to be patient.
31:38 That's it.
31:40 Yeah, and then if we put him in his chair
31:42 first, then we'll get started.
31:44 So, parenting
31:46 isn't difficult because
31:48 our guys that we have working for us
31:50 are all very understanding
31:52 and they respect that.
31:56 "OK, are you chewing it properly?"
31:58 "Tomato." "Tomato?"
32:02 "Yeah, and the other one as well."
32:04 "We've all got the same."
32:08 "Just push me forward a little.
32:10 Yeah, thank you."
32:12 "Perfect."
32:14 "Thank you."
32:16 "Eat some more."
32:18 "Eat some more."
32:20 "Happy day, good boy, you alright?"
32:28 "Brush your hands off."
32:30 "Good boy."
32:32 The thing that stands out for me most
32:34 is when Rowan hurts himself
32:36 and we can't pick him up
32:38 to sort of hold him. That's probably the one
32:40 thing that I wish I could do,
32:42 but obviously I'm grateful that they can do that for me.
32:44 It's your turn.
32:46 "Where did I go?
32:48 Are you on a thing here with Daddy?" "Shall we go in here?"
32:50 "Yeah." "Little sis, come on."
32:52 "Uh-oh." "Rowan!" "Come back, you!"
32:56 The hardest thing
32:58 for me with Rowan
33:00 is being able to pick him up
33:02 and hold him tight
33:04 and just to let him know that I'm there for him.
33:06 Yeah, that's hard to deal with.
33:10 "We're going to the farm."
33:12 "You can't go to the farm without your shoes on."
33:14 We're not
33:16 classed as a normal
33:18 human being. Like, we're not
33:20 allowed to have children.
33:22 "There's a car! There's a car!
33:24 Yeah, they're birdies!"
33:26 And we're not
33:28 allowed to be able to drive a car
33:30 or own our own house
33:32 or work. And that's
33:34 how I feel that the public
33:36 perceive us.
33:38 "Shall we put your hand strap on?"
33:40 "Oi!"
33:42 "Oh, nearly!"
33:44 When we're out and about
33:46 in the general public, people
33:48 never think that we
33:50 are Rowan's parents.
33:52 "Good boy." "That's it, good boy!"
33:54 They always just assume that
33:56 whoever's with us is either
33:58 his guardian or his mother or
34:00 father. And that's
34:02 quite upsetting
34:04 and it annoys us a little
34:06 bit, doesn't it? Like... "Yeah, it does, yeah."
34:08 Because
34:10 what is normal?
34:12 What I want people to
34:14 watch this and to know that
34:16 we are just a nice family
34:18 of three and, yeah, we might be in wheelchairs
34:20 but we're no different to
34:22 them.
34:24 "Hiya, Mr. Goat!"
34:26 "What? Come here. Stand on here."
34:28 "Say hello, goat!"
34:30 It's nice to watch
34:32 him go off and
34:34 yeah, for him to accept
34:36 us as his parents.
34:38 And that's heartwarming
34:40 and that is ultimately what
34:42 I wanted when I started this
34:44 journey, when I decided I wanted to be a parent.
34:46 Is, will my child
34:48 love me like a child loves any other
34:50 mother? And the answer is yes.
34:52 We love him
34:56 so much
34:58 and he returns it, he
35:00 gives that love back to us and it
35:02 makes everything worthwhile.
35:04 "It does, definitely." And it made all of the
35:06 pain from pregnancy worthwhile and
35:08 yeah,
35:10 it's, yeah, he's
35:12 cool. He's, I'm proud to
35:14 be his mum and
35:16 I'm proud of who he's
35:18 turning to be.
35:20 "He's off."
35:22 "He's off."
35:24 "Rowan, wait for us." "You're too fast."
35:26 "Oh, he's asking
35:28 for her." Our next story
35:30 is about a couple who
35:32 decided that their experience of living
35:34 with their condition would make them the
35:36 perfect parents to their
35:38 adopted daughter. "We are
35:40 pretty different than
35:42 other families, but
35:44 a lot the same. But the difference
35:46 is, you can see,
35:48 we use wheelchairs to get around,
35:50 our house is different."
35:52 "Thank you, Pearl. Thank you."
35:58 "Good girl."
36:00 "So we have different challenges
36:02 in our life, but we are
36:04 also just a lot
36:06 of like, like your typical family as
36:08 well."
36:10 [Music]
36:12 "It's really,
36:14 really easy to break a bone. You could just,
36:16 you can sneeze and you can break a bone.
36:18 I'm gonna
36:20 see this bird.
36:22 I've broken
36:24 over 200 bones. Hey,
36:26 I can see the neighbour.
36:28 They have a white lamp.
36:30 That's cool. Oh,
36:32 they have a camera."
36:34 Between them, the family have broken
36:36 over 600 bones
36:38 due to a rare condition they have
36:40 called osteogenesis imperfecta,
36:42 which makes their bones
36:44 as fragile as glass.
36:46 "OI, or osteogenesis imperfecta,
36:48 is a brittle bone disease
36:50 disorder. It's genetic,
36:52 a genetic mutation
36:54 that obviously
36:56 is pretty painful, and
36:58 that is why we're
37:00 smaller than the typical person
37:02 and of course use the
37:04 wheelchairs. And you can see up on my,
37:06 on the range here, up here
37:08 I have two mirrors so that I can see
37:10 into my pots because
37:12 if I have a pot of boiling water, I can't, I'm
37:14 so low that I can't see into it. So those
37:16 mirrors help me do that, which is neat."
37:18 "Get close, close it, bro.
37:24 Yes, thank you.
37:26 Good girl. Good girl.
37:28 There are different types
37:30 of OI." "I think now
37:32 say there's six different types."
37:34 "Or even more,
37:36 I think there might be even more."
37:38 "I think we both have what's called type
37:40 three, which means you're
37:42 short statured and
37:44 have kind of a barrel chest and
37:46 very brittle bones."
37:48 "And I think that
37:50 Aneesi has a similar type."
37:54 "Okay.
37:56 OI affects me
37:58 on a daily basis because
38:00 I break a lot, so
38:02 and that's not normal.
38:04 And so
38:06 like,
38:08 I can't really do a lot of things.
38:10 I like to paint
38:12 a lot. I can just
38:14 express my feelings through my art.
38:16 I just feel really happy
38:18 and peaceful."
38:20 "You do wish that you were
38:22 a walker.
38:24 And
38:26 I guess I just wish
38:30 that a lot too.
38:32 But I'm happy about who I am."
38:40 Aneesi was adopted by her
38:42 parents when she was seven years old
38:44 from her birth country, Belize.
38:46 "When Chris
38:48 and I got married, we always kind of knew that
38:50 we wanted to have, get a little,
38:52 adopt a little girl that had
38:54 OI so that we can share
38:56 some of our experience and knowledge
38:58 with that child and make it
39:00 maybe easier for them."
39:02 "The process
39:04 is very long, a lot of paperwork of course.
39:06 And finally they said
39:08 you can come down and meet Aneesi.
39:10 Drove straight to see her and she was
39:12 sitting outside her little dormitory
39:14 in the children's home and she was sitting there
39:16 in her stroller with
39:18 her bag packed and it was sitting right next to her.
39:20 And it was just an incredible moment
39:22 because I'd always wanted to be a mother
39:24 and we'd always wanted to be
39:26 parents and Chris and I
39:28 knew at that second that that was our daughter
39:30 and it was totally meant to be that way."
39:32 "And again in our living room, these are
39:34 three paintings that Aneesi did.
39:36 The elephant over there is beautiful,
39:38 one of my favorites.
39:40 And the giraffe.
39:42 And here is
39:44 in Miami. We waited
39:46 two and a half years
39:48 to adopt Aneesi.
39:50 It's
39:52 the greatest thing in our life
39:54 that we've ever done.
39:56 And we share a special bond
39:58 because we're a family, because we love
40:00 each other, but also because we
40:02 all three have a why.
40:04 And we go
40:06 through the same thing. We know exactly
40:08 what it's like when something happens
40:10 or the fears that are associated
40:12 with it.
40:14 And that is extremely important and
40:16 comforting at the same time. Oh my god,
40:18 I know." Married for 11
40:20 years, Chris and Lisa
40:22 have known each other since they were
40:24 babies. "So we
40:26 have known each other since Chris was born
40:28 because I'm a little bit older than he is
40:30 and
40:32 he moved away
40:34 and we kind of lost contact
40:36 for a while and then about
40:38 12 or 13 years ago,
40:40 we contacted
40:42 each other
40:44 again online and started talking
40:46 and fell in love and eventually
40:48 Chris moved out here to be
40:50 with me in Colorado."
40:52 "I attend a
40:56 normal public high school, just
40:58 like any normal person
41:00 and nobody
41:02 sees me differently and
41:04 everybody loves
41:06 to help me out and
41:08 I think that's amazing."
41:10 "I could do that over like roasted
41:12 vegetables, like roasted carrots." "That would
41:14 be really good." "Yeah." "Our disability
41:16 has opened up many doors for us.
41:18 Anissi was an ambassador
41:20 to Children's Hospital and she
41:22 painted
41:24 a painting for them to auction
41:26 off at their gala and that
41:28 night we all went and we were sitting at the gala
41:30 and they started the bidding
41:32 for her painting and it went for
41:34 $50,000 that night. She
41:36 raised $50,000 and then the auctioner
41:38 said, 'Is there anyone that will match
41:40 that for her to do a second painting?'
41:42 and someone raised their hand." "It makes me cry."
41:44 "And that is the one
41:46 that sold, one of the ones that sold
41:48 at Children's Hospital for
41:50 $50,000. That's just a print
41:52 of course." "As much
41:54 as we are proud of those big moments,
41:56 we're proud of the little things.
42:00 Two,
42:02 for instance,
42:04 Anissi went to prom last
42:06 week and she was nervous
42:08 about it and
42:10 she was nervous because
42:12 she was going to be the only girl there that was
42:14 different, that was using a chair.
42:16 But she didn't
42:18 let it stop her and
42:20 she had a great time and those things."
42:22 "Neither
42:24 did I, before I went to prom
42:26 when I was young, it was not."
42:28 "Yeah, she just had so much more
42:30 confidence and we're so proud of her."
42:32 [Music]
42:34 "Yay, thank you!"
42:40 "Anissi's getting where she doesn't break as
42:42 much either." "I'm pretty much just as strong as you
42:44 with both hands." "Oh my gosh,
42:46 that's so not true.
42:48 But we're going to go with that for now." "We're going to do
42:50 arm wrestle." "Oh my gosh."
42:52 [Music]
42:54 "I don't know if I can imagine life without
42:58 it. I think
43:00 it's just been a part of me for so long
43:02 it's hard to imagine what it would be
43:04 like. Maybe when I was younger I used to
43:06 dream or think about what it would be like
43:08 to walk or to have the average
43:10 experiences or typical experiences
43:12 but now
43:14 I mean, I wouldn't trade
43:16 it because there are so many wonderful things
43:18 that have happened. Chris
43:20 is in my life, Anissi is in
43:22 my life, and of course those
43:24 two things I would never trade."
43:28 "Yeah, my parents, they always say
43:30 just be yourself.
43:32 Be your funny
43:34 self and don't
43:36 let people
43:38 get in the way of who you are."
43:40 "This is our life.
43:44 This is what we have. We have to make the
43:46 best of it and think about all the
43:48 positive stuff because there's a lot of positive stuff."
43:50 Our final couple
43:54 have both been able to achieve
43:56 amazing things in life because
43:58 of the things that make them different
44:00 from everyone else.
44:02 "We live here in
44:06 Clargland. As you can see around you
44:08 the mountains and everything, it's fantastic.
44:10 Very nice town. It's quiet."
44:12 "What's up everybody?"
44:16 "Maybe don't
44:18 groan." "My name's Maddy and I'm a member
44:20 of the Canadian Paralympic
44:22 track and field team and I compete in the
44:24 event of long jump." "My name is
44:26 Jordan and I'm an athlete on the
44:28 Irish Paralympic team that specializes
44:30 in the sport of high jump."
44:32 "Back in 2019 we were both at
44:34 the World Championships in Dubai.
44:36 I was on Team Canada
44:38 obviously and then Jordan was on Team Ireland."
44:40 "She pretty much stayed into my games
44:42 if I'm being honest. Paralympics actually
44:44 reposted my post and
44:46 she
44:48 followed me through that post
44:50 then sent me a message asking if I was going to
44:52 be at the track and she walked up
44:54 to me in front of the entire
44:56 Irish Paralympic team
44:58 at the track which
45:00 took a lot of nerves." "To tell you the truth
45:02 I went over to Dubai to win a medal but came back with
45:04 a girlfriend so it was definitely something
45:06 that wasn't expected.
45:08 I think we have a really nice dynamic
45:10 to have a partner
45:12 who does exactly the same thing that
45:14 you do. They'll understand the workload
45:16 and commitment that's involved in going to
45:18 these events. Becoming an
45:20 Irish Olympian or a Paralympian
45:22 it's a 24/7 thing."
45:24 "I'm going to head to the gym.
45:26 Here's some weights.
45:28 See you later.
45:30 Bye bye.
45:32 Love you.
45:34 Enjoy."
45:36 Unlike all of the people in this video
45:38 Maddy wasn't born different.
45:40 "When I was three years old I contracted
45:42 meningococcal disease with septicemia
45:44 and gangrene.
45:46 It's also known as meningitis
45:48 and they had to amputate both of my legs
45:50 to save my life.
45:52 And I also had four of my fingers amputated
45:54 on my left hand and I went
45:56 completely deaf in my left ear.
45:58 I was still only given less than 2%
46:00 chance of living because it's a very
46:02 progressive disease. A lot of people
46:04 that get it don't really make it past
46:06 the 24 hour mark.
46:08 It's pretty much a miracle
46:10 that I'm here today.
46:12 When I was growing up my
46:14 bones wouldn't recognize
46:16 that they had nothing to
46:18 grow into. I do remember
46:20 getting fitted with my first pair of prosthetic
46:22 legs. For me it was
46:24 a little bit scary at first because
46:26 I had to learn how to do
46:28 everything again.
46:30 My very first pair of prosthetic
46:32 legs, they were quite
46:34 heavy and they were quite stiff.
46:36 They were kind of hard to walk around and I won't lie.
46:38 Now the technology
46:40 is amazing. I mean my prosthetics
46:42 are nice and light. They're comfortable.
46:44 My ones that I use for training
46:46 then they're even lighter and
46:48 they allow me to move freely.
46:50 It was a bit difficult growing up when I
46:54 was trying to get involved in sports because
46:56 it was something that was
46:58 foreign to them. They had never had an
47:00 athlete before come to them that had a disability.
47:02 There was multiple clubs
47:04 that turned me away because they didn't
47:06 want to have me there because
47:08 maybe I was a liability to
47:10 them. I wish people would sometimes
47:12 see us first as
47:14 people rather than people who have
47:16 disabilities.
47:18 Hey. Hello. What is up?
47:24 I have a coffee for you.
47:26 You better have a coffee for me.
47:28 That was a crack.
47:30 From a very young age I always knew
47:32 death. I was different from everybody
47:34 else. It was something that happened at
47:36 Burt. It's called amniotic band
47:38 syndrome where the umbilical
47:40 cord wrapped around my elbow restricted
47:42 the blood flow which therefore
47:44 resulted in the stoppage of growth.
47:46 I happened to live in a relatively
47:48 rough estate you could say.
47:50 There was difficulties and
47:52 challenges getting involved in
47:54 sporting settings, getting strange looks,
47:56 people saying that you'll
47:58 never be able to play basketball or
48:00 you'll never be able to do this or that you look strange.
48:02 They don't happen anymore
48:04 but they used to happen frequently.
48:06 How was gym?
48:08 Good yeah. It wasn't too bad.
48:10 Feeling good. Feeling strong.
48:12 Looking forward to getting back now hopefully
48:14 in competitions.
48:16 In 2015 I became the
48:18 first one handed basketball player to ever
48:20 represent their country nationally in the world.
48:22 Obviously it took a lot of hard work
48:24 and dedication to achieve
48:26 that goal. I was just so determined
48:28 to be able to prove
48:30 all the haters I
48:32 suppose and doubters wrong and
48:34 the people that just didn't believe in me because there
48:36 were a lot of people that didn't believe in me at that point.
48:38 Living with a limb difference
48:40 the pair have had to deal with
48:42 both ignorance and unwanted
48:44 pity from the public. People have asked
48:46 us in the past if we were to have kids
48:48 in the future if they would be missing
48:50 their limbs because we are both missing
48:52 our limbs. You get like the
48:54 holy people that
48:56 like, they're like
48:58 God bless you.
49:00 God bless your spirit. Is your hand going to grow back
49:02 now? No it's not going to
49:04 grow back. It's a lent man.
49:06 They're like oh I'll pray for you
49:08 and like, I mean thanks. You should pray
49:10 for yourselves buddy.
49:12 Oh God. People just make
49:14 assumptions that either
49:16 myself or Maddy we're good athletes
49:18 simply just because of our disability
49:20 in our category but we're
49:22 good athletes overall full stop.
49:24 Do you want to head away now?
49:26 Yeah let's go to the track and get warmed up.
49:28 We train 12 times a week.
49:30 It's our routine. We know what we have to do
49:32 to try and be the best in the world.
49:34 Alright guys we'll get set up
49:38 and we will get to it.
49:40 You guys start jogging around and start warming up.
49:42 So these prosthetics are my
49:44 running blades and it kind of gives me
49:46 what a real leg would
49:48 feel like.
49:50 My very first experience
49:52 of helping out an athlete
49:54 with a disability would have been Jordan.
49:56 I had no background in coaching
49:58 anybody that would have had
50:00 to make adaptations or anything like that.
50:02 Okay skip.
50:04 Get your toes up, toes up, toes up.
50:06 Both of them would pride themselves
50:08 as kind of representing para sport
50:10 on a level playing pitch
50:12 with able-bodied.
50:14 So it's quite inspiring to see
50:16 they've all
50:18 stopped having to do a double take.
50:20 They're all used to her being there now and
50:22 I think a lot of them are quite honoured that
50:24 they'll see somebody who doesn't see
50:26 barriers.
50:28 My tattoo says
50:30 'Never Say Can't'
50:32 and it's above one of my scars that I had
50:34 from surgery when I first got meningitis.
50:36 Mine are the Olympic rings as you can see
50:38 here in my left bicep
50:40 and the Paralympic symbol on my left
50:42 pec. Only 0.001%
50:44 of the entire population of the world
50:46 would get to become a Paralympian or
50:48 Olympian.
50:50 I think it was only right to kind of
50:52 acknowledge the achievement of getting there
50:54 and by having it on my skin and
50:56 with me for the rest of my life.
50:58 With all the opportunities that
51:00 this sport has given me
51:02 I wouldn't change it for the world.
51:04 I mean I got to meet Jordan because of this sport.
51:06 Yeah I wouldn't change it for the world.
51:08 I absolutely love it.
51:10 Do you know a family or couple
51:12 with an amazing story like these guys?
51:14 If so, get in touch.
51:16 And if you enjoyed the video
51:18 please like and subscribe.
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