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00:08as a quadruple amputee day-to-day life is definitely hard sometimes I have to do things
00:14with my teeth my main goal is to be more independent my skin went through transformation
00:22that affected me tremendously it felt like I was getting lighter as hell I became a recluse
00:30I'm just scared out of my mind how do you come back to the world and say hey I'm still
00:35a black
00:35man warning my skin grows 14 times faster than the average person you look beautiful today thanks
00:43mom the worries were very much about survival I would love to date would want to date her right
01:01I got this nope get out of here God you can't not let me do anything but myself it's a
01:11habit I'm sorry
01:16seriously give me that no yes give it to me back up I surrender I really do okay stop
01:24oh my god we gotta keep you on your toes I don't have any toes
01:34my name's Danny I'm 33 years old I live near Santa Cruz it's just like a surfer chilled town I
01:43love
01:43going to the beach the beach is amazing I would describe myself as wild energetic
01:54but as a quadruple amputee everything's a challenge I've lost my legs below the knee I've lost my left
02:05hand and partial of my right hand and that's how it is that's how it is today
02:20day-to-day life is definitely hard it's not only hard on me it's hard on everybody around me my
02:27name
02:27is Ricky I am 31 years old and I am Danny's boyfriend I love him he's amazing he does so
02:35much
02:35stuff he does everything for me I want to do things on my own so when somebody has to do
02:41it for me it feels
02:43like your life is kind of being taken over my main goal is to be more independent that's my future
02:52goal
02:55met Ricky before all of this had happened we knew each other through friends but I never really spoke
03:02with him I was working out so I was posting a lot of workout videos
03:14I kept sending her fire emojis on Instagram and then she sent me a firetruck yeah stop the fires
03:28our first kiss was at the beach I was nervous sweating my life was flashing before my eyes
03:40six years later we're here yeah
03:58Ricky my sister and I were going on a road trip to Colorado and I was actually feeling perfectly fine
04:04we got to her house and we were just hanging out everything was normal a couple days passed
04:09by and we planned to go on a hike and we get to the park and I felt like kind
04:16of weak like I felt like
04:18I couldn't breathe properly I can't move so that night it got a lot worse I started sweating I started
04:26getting heart palpitations I I couldn't breathe well I actually could barely even walk and I had kind of
04:33like a weird like rashy look to my body as soon as I saw her you know going gray blue
04:40lips and drove
04:43to the hospital as fast as I could it was the most frightening thing I ever had to do in
04:47my life I've
04:48been through a lot of things and I would never ever want to go through that again so that whole
04:59next day
04:59I was still not getting any better getting worse they put me in the ICU and my vitals everything was
05:06dropping and
05:09then they had to airlift me to a another hospital because they didn't have the resources there to
05:15help me all my organs were failing the helicopter paramedics were telling me stay with us stay with us and
05:26trying to keep my attention to keep me alive I looked down and I saw the lights of the town
05:32down
05:33there next thing you know everything went blank and this is the hard part to talk about because I saw
05:41kind of like a field um that I was in I'm sorry and it was like the calmest feeling I've
05:52ever felt felt in my
05:53life life and then that's uh when my heart stopped in the helicopter
06:11I remember standing by her bedside holding her hand and she pretty much dying in front of me
06:26while she was there in bed I kept telling her um it's gonna be okay like Ricky and me are
06:33here for
06:33you and it wasn't until that night because she was going into an intensive care unit the last words
06:40that I said to her was hold my hand sis and I actually have it tattooed on my hand because
06:48it
06:48was the last thing that I got to say to her before all of this happened
07:05they call it necrosis I could barely feel anything my fingers were curled up and they couldn't move and
07:13they were black the doctor looked at me and she's like you know I have some pretty tough news and
07:20I
07:20don't think Daniela is going to understand it when it's coming from me
07:40so I walked in and I grabbed the bottom of her foot you're gonna have to let go of your
07:46hands and
07:46your feet at this point that's the only way to save you because if you leave them it'll take you
07:58when I heard that I knew my life was changing and I was in shock and I started crying to
08:06my sister
08:08it was an overwhelming amount of emotion where I just didn't know what to think at that moment
08:30oh my god I'm so happy when I got the call that my daughter was in the hospital she wasn't
08:39doing
08:39well I was panicking I took the next flight to to to the hospital and go and we'll see her
08:47yeah and when I
08:49got there he was just heartbreaking this is the reason I don't want to talk about it because it
08:56makes me cry it brings me so many bad memories when I first saw that I no longer had my
09:06feet I broke
09:07down I broke down I felt like okay my life's over
09:29I do get mistaken for being white
09:33hey are you Mexican Latina you know and I'm like no I'm black all black my name is Curtis Thibodeau
09:44Jr.
09:45I'm 37 years old nine years ago my skin went through a transformation that affected me tremendously
10:02no skin color no fingernails no hair all of that was gone within a matter of months nine years later
10:08and I still feel damn how do you come back to the world and say hey I'm still a black
10:16man
10:25I'm always in a choir I'm always in a band I've gotten to sing in front of the Southern University's
10:30band my life has always been involved around having fun or being the life of the party
10:34my skin color to me represents power I know exactly how powerful I am as a black man
10:43it's like my armor literally inside hiding all day and I was terrified wasn't letting anybody in
10:50I became a recluse
10:59I have this sharp pain from my hip if I sit down it's gonna be hard to get up
11:05anxiety is playing I told him
11:09every day every hour every second it's like a piercing pain or like a dagger that's kind of twisting
11:15it's hell I really hide away because of how I walk like I'm really embarrassed about it
11:24I just worry about people noticing I have this waddle like a penguin
11:29it's like his legs were messed up because of his hip
11:32I caught a frog legs one time and it just stood
11:42I have been down and beaten and hidden away for a while
11:46today's surgery just thinking about it there's a lot of factors in place scared of surgery scared of
11:55mortality mentally it was a roller coaster for me I'm worried about this surgery what if he doesn't
12:02feel right what if there's still a limb how do you fix that
12:10when I was younger I didn't really feel a beautiful or attractive it's very isolating I want to like
12:16hide myself and be as small as possible so no one could judge me you know you wish you like
12:21it could
12:23be better
12:32my name is Portia Sina I am 18 years old and I am currently a student my condition is called
12:40ichthyosis with confetti essentially it is a gene mutation where my skin is producing the wrong
12:55protein which is why it's red and you know it's just completely different than anyone else's
13:06the reason my skin condition is called confetti is because I have like tiny like little spots um
13:12which is actually the cells fixing the mutation and turning back into like normal skin when I was
13:18young I've only had a few spots all over my body and now I have like a bunch um and
13:23they grow
13:24throughout my life it's great to be home I'm very close to my family it's like my comfort zone you
13:33look beautiful today thanks mom see the skin lacks lipids which keeps your skin moist the skin
13:44around my eyes is drier so I don't blink as much which results in like my eyes watering my skin
13:51is
13:51usually worse in the morning morning I wake up and sometimes my skin will feel achy and so I'll
14:05take an average painkiller for that and sometimes it'll feel like itchy this is my cream lotion that
14:13I use in the morning when I do my morning routine I do my whole entire body it takes 30
14:1945 minutes
14:21I would never skip my morning routine because that would lead to just horribly dry skin like I would
14:28not be able to move I would be so uncomfortable when I saw her for the first time um I
14:36I'd never
14:37seen a newborn before honestly didn't know anything until you know call it 10 20 minutes after we went
14:43into the recovery room and they came in and said you know those dreaded words a parent doesn't want to
14:48hear is you know mr. mrs. cena there's something wrong with your baby all they said was her skin
14:53was sloughing off so we're gonna put her in an incubator for me it was complete and utter shock the
15:02worries were very much about survival I was just hysterically crying it was a very crazy moment when she
15:11got her diagnosis which was around two or three weeks old they told us that this is a condition that
15:17she's just going to have there is no cure for ichthyosis any parent would have those kinds of thoughts
15:25about what's going to happen to her in the future and then Jolie had the thought of you know these
15:31normal milestones that your kids have like will she ever go to the prom will she ever have a boyfriend
15:36and um you know your mind just kind of runs away from you
16:03my first thought about Ricky was this is going to be a lot of work and he was not going
16:08to accept this I
16:10didn't want him to feel forced to have to deal with this just kind of being like 24 7 caregiver
16:17it
16:18would be easier for him to just kind of walk away at that point I decided to become her full
16:25-time
16:26caregiver because she would honestly do the same thing for me there were no doubt in my mind that
16:32if she needed help I would be the one to help her I kind of knew that she felt comfortable
16:37with me
16:37doing what everything I needed to do so I just decided to take on the full responsibility but I
16:49knew it was going to be hard things are going to get frustrating man there's no way anyone's ready for
16:58that kind of situation ever it really honestly hurts me to see him doing everything all the time and I
17:04always feel like bad I do worry about him getting like overwhelmed or tired or just over it there we
17:14go
17:15yay because he's doing everything all the time ready ready doing things for Ricky by myself means so much to
17:25me is this like the perfect massager yeah my whole family was there
17:48just taking that first step it melted me inside and I just dropped my head and I start crying
18:00I didn't know where this one decided she wanted to walk all the way out the door she's all I
18:06got my
18:07legs I'm out of here currently I'm I'm just kind of doing one or two physical therapy days a week
18:15when I was
18:17walking it was very very painful at first I call them my lamber fetis or my chevro legs
18:25they're carbon fiber isn't it so much fun it's so fun Ricky oh well maybe not
18:43the goal is to be able to walk a longer distance and we do a lot of walking those days
18:49so those days I
18:51kind of like are the days that I beat my record or try to some days I don't some days
18:58I do I'm so
18:59hard on myself in my head I'm just constantly repeating like you need to beat that record
19:05the thing I remember most before I collapsed was my mom doing her best to get me into the car
19:11so we
19:12get to the ER I've never been that scared in my life I it felt like I was touching death
19:32how you feeling a little pain a lot of nervous
19:52today's surgery for me means a new start I'm just scared out of my mind hip replacements for a vast
20:02person across us have some of their own specific risks and complications his condition has basically
20:08eroded his hip extremely unusual for someone you know in the mid-30s to have that type of problem
20:19but God as we gather here today send your healing angels and protect them in the mighty name of Jesus
20:25Lord amen amen amen I think the surgery is going to restore who Curtis was back to that personality that
20:36has kind of been trapped since 2017 I'm at work my colleagues told me that the area where the ingrown
20:52hairs had started to bleed the first initial signs were pain my lips were swollen skin was flaking the scalp
21:11underneath is very sore he just laid my lap and I would oil him down from head to toe just
21:20to give
21:20him some relief I've never been that scared in my life it felt like a hot stove it's literally taking
21:31over my
21:31body this is one big rash that I could kill off once I got up you can tell why I
21:39had been sitting it felt
21:41like I was getting lighter that's how I felt right before I collapsed man I remember a doctor coming in
22:00and he's like oh Mr. Thibodeau I was glad to see you your kidney and your liver was not functioning
22:05it almost lost you for a minute
22:20DRESS stands for drug reaction with inocenophilia and systemic symptoms that almost took my life
22:34I was in hell for six seven months straight I was diagnosed with alopecia so I shaved my head but
22:43it was this one little spot it never fell out one day I was just like you know what it
22:48so I took a pair of
22:49tweezers I still think about the last survivor it's like I'm saying bye to a friend we get to November
23:02we're
23:03diagnosed with vitiligo vitiligo is a disorder that causes the pigment in your cells to die and I was
23:10told it'll be some pigment loss my pigment my melanin was murdered
23:26I did it the steroids were killing my hips the only way to treat this is with surgery it's like
23:33I'm
23:33dragging around a dead limb really because it's I can't do anything with it you know
23:41but surgery doesn't work where do we go now
23:53I'm gonna try to cook Ricky a surprise meal and see how it goes
24:04I seriously love cooking like it's one of my favorite things
24:08this is actually like an adaptive knife for anyone that has gripping problems here we go hopefully I
24:17don't chop anything else off I've never cut myself actually as I fling my knife takes me a little
24:27longer than normal but here we are we'll try our best a few things that I'm worried about cooking this
24:36meal is burning myself let's put those bad boys in there let's do that so it's really hard for me
24:48to
24:48like hold the pan and you know shake the pan around to move everything around and I always drop things
25:00garlic attack I can't really wear oven mitts so it's very hard for me to cook with that kind of
25:07stuff so I mostly do like stovetop just because it's level with me
25:13that's kind of like a few little things that I'm a little terrified of for sure I think the hardest
25:20thing about cooking is opening things on my own
25:23sometimes sometimes I have to do things with my teeth that's how things get done around here
25:42he likes his steak really well done oh I risk everything
25:53this is very hard
25:59aha sometimes the food doesn't make it to the plate really crazy for me like really exciting
26:07oh my gosh
26:10I did it
26:12it smells good in here
26:15don't look
26:17are you ready
26:18yeah
26:18I gotta make sure I don't drop this
26:22oh my gosh
26:24big old steak
26:26I made it all by myself
26:28thank you so much for me
26:29you're welcome
26:30burned my my little nubbies
26:32opening the rice
26:33I thought that you know in the beginning I wasn't going to be able to do anything even
26:39remotely close to this
26:41cheers
26:41it's just an extra push for me to do better
26:45wow
26:46that is really good
26:51I'm excited because I want to push myself that way I can be more independent but I don't know if
26:57how it's going to come out I'm nervous
27:07if the surgery doesn't work where do we go now
27:19hi guys
27:24everything went great
27:25thank you
27:27that's awesome
27:28I gave him some sedation he kind of relaxed we did the hip replacement there
27:32moving him over to a recovery
27:34things should be good when he wakes up
27:36it was really deformed
27:39the headache collapsed completely
27:42dancing
27:44well hopefully we'll be able to get him back dancing
27:46if that's what he likes to do
27:47I'm so happy
27:48I'm so happy
27:49I'm so happy
27:55hey my sweetheart
27:57you did really good
27:58this is finally over
28:02I'm worried about the surgery
28:03what if he doesn't heal right
28:05there's still a limp
28:07what if one leg's really longer than the other
28:09how do you fix that
28:14going to Louisiana
28:16ooh
28:18coming from Alabama
28:20ooh
28:27hey mom
28:28you made it
28:29yeah
28:29man how you doing
28:31I'm good
28:31you doing good
28:32yes
28:33I like those strides
28:36it feels good
28:38I'm looking at you
28:39you just strutting along
28:41you don't have no limbs or anything
28:42no I feel pretty good
28:43that's awesome
28:44just being able to walk
28:47without a limp
28:48I am elated
28:49having him walking
28:52oh
28:53that's a blessing
28:54I love
28:56him being pain free
29:05we thank you for Curtis
29:09that he continues to have a speedy recovery
29:12amen
29:12amen
29:13amen
29:14that was good
29:15that was good
29:16amen
29:17let's eat
29:21got tired of hiding from family
29:23I was terrified
29:24literally
29:25skin is on fire
29:26and I'm driving to work shirtless because
29:29what
29:30it burns
29:31it burns so bad
29:32to wear clothes
29:33yeah
29:34it felt less of myself
29:35I felt worthless
29:37like I couldn't be
29:37the one that everybody loved
29:39we love you
29:40you just have to show up
29:41we love you
29:42we love you
29:42a lot of my confidence come from you
29:45even one day after he cried
29:47oh my god
29:48I got one
29:48yup
29:50damn
29:51you literally just been showing me how strong
29:55you are
29:57I love you
29:57I love you
30:03and I love to see you
30:04not being able to you know
30:06run
30:06or jig
30:08it's what we call dancing down here
30:10cause we're in Louisiana
30:11um
30:11jig just kinda you know
30:14celebrate you know who I am as a person
30:16that's a blow
30:17to an ego
30:19you know especially when you're used
30:21being the life of the party
30:22so I'm excited for that
30:25so are you dating?
30:31when I was younger I didn't really feel beautiful or attractive
30:34so I would definitely like to gain confidence in myself
30:44I was very very shy and I think it was very related to my skin condition
30:49to be this shy was very isolating
30:52P-O-R-T-I-A
31:02I didn't really have a lot of friends in elementary school
31:05and I sat by this like one kid
31:09he was like are you contagious?
31:13when I was in middle school I would also like get like asked out like as a dare
31:17because it's like wouldn't it be funny if you know you asked out like who would want to date her
31:21right?
31:22it's very isolating
31:24I'd want to like hide myself and be as small as possible so no one could judge me
31:31it's like sad to like think about sometimes
31:36sorry
31:36okay
31:37you alright?
31:38yeah I'm fine
31:40it just like
31:42you know how you wish you like it could like
31:45be better
31:49it's just a shame like
31:50that like younger me like had to like
31:53go through that
32:05are you recording?
32:08never miss an opportunity
32:13wow
32:14thank you
32:16were you just riffing the whole time?
32:17yeah
32:22yeah
32:23I started playing the piano when I was five years old
32:25just made me feel like secure and safe
32:29so my parents convinced me when I was younger to go out and perform
32:34I performed at restaurants, at bars
32:37I was in a rock band, in concert choir
32:40when I'm performing I feel more confident
32:47it
32:47it gave her something
32:48to be able to do
32:50and people to look at her
32:51for a reason that wasn't the ichthyosis
33:03my younger brother Miles is 15 years old
33:05I would say we definitely have a good relationship
33:08I smoothed it out, it was all like crusty from your fingernails
33:10for food shopping today
33:12here
33:12here with my brother
33:13yeah
33:14okay
33:15wait is this shredded?
33:16I found shredded
33:18okay
33:18he left
33:20we don't talk about our skin condition like
33:22at all
33:23unless we like
33:24you look really bad today
33:25if my sister's looking a little crusty
33:27I'll tell her to like put lotion on
33:29or both go upstairs
33:31and like put some lotion on
33:32to make yourself look
33:34you know less crusty
33:36that's such a beautiful way to say it
33:37thank you
33:38no wait
33:39you're so close
33:39no
33:40I shoot an ace
33:41I shoot an ace
33:42no
33:47when I was younger
33:48like when people would look at us
33:50or stare at us
33:50Portia was very quick to like to defend me
33:53or defend both of us
33:54because Portia was born first
33:55she has to like go through everything first
33:58and I can just like follow behind
33:59like a clear path in front of me
34:01dude's not gonna end if I keep playing Zeus
34:02it's so stupid
34:03you're actually so dumb
34:04you're definitely counting cards
34:05I didn't, I didn't
34:06I trust
34:07Portia's paved the way for me
34:08that helped me have an easier life
34:10in school and in high school
34:11it's nice knowing that like I
34:13you know was the first person
34:14who had to go through it
34:15so Miles doesn't have to go through it
34:16because I wouldn't want anyone to go through
34:18like what I went through
34:27oh my gosh how are you
34:29good how are you
34:30good how are you
34:31I'm so happy to see you
34:32your hair looks so good
34:33I met Malia of middle school
34:36she brought me into her friend group
34:37your hair looks so good too
34:39thank you, thank you
34:40I can like truly be myself around her
34:43oh yeah let's go
34:47do you feel like any pressure
34:48like at school
34:49I feel like
34:50to like get a relationship
34:51I feel like there is
34:52when it like comes to like guys
34:53like I would say like
34:54I feel like most of them like
34:56judge you like on your physical appearance
34:58you should feel good
35:00and confident with yourself
35:01and like the right people
35:02will come to her
35:04aww
35:04being able to
35:05move through the world
35:07happy and confident
35:09and successful
35:11with whomever walks beside her
35:14you know friends
35:14our partner
35:16you know
35:16that's what we want for her
35:18I definitely think that like
35:19there's someone out there
35:20I would just love to have people
35:22all around me
35:23I don't know
35:24I just want to
35:24I just want to be happy
35:25I don't know
35:25just kind of continuing on the self-growth path
35:29and being with friends
35:30and you know just growing
35:36with walking
35:37well the goal I've reached so far
35:39is 1420 feet
35:43we're kind of trying to beat that
35:44every time I go in
35:47how many feet is that?
35:56Dad!
35:57Dad!
36:07Wow!
36:12This will be him seeing me walk on my own
36:14for like
36:15I think the first time
36:18I'm ready to see you just walking
36:20without a
36:21without anything?
36:22without anything
36:22anywhere?
36:23anywhere yes
36:25I know
36:25me too
36:26oh man
36:29I hope I beat my record
36:41oh man
36:43this feels good
36:45staying comfortably now
36:46and um enjoy
36:47you know just kind of being outside
36:48I do
36:49I love that
36:50I haven't felt this good
36:52I've been
36:52honestly just
36:54up and down
36:54for a good
36:55six seven years
36:58he hid away for years
37:00he did not want to go out of his house
37:02I'm ready
37:03I'm ready to dance on this bar
37:05with Curtis
37:08and I just
37:08just ready for him to get back to himself
37:14literally nothing
37:15the queen has arrived
37:16hey new
37:17what up
37:19hey new
37:19what up
37:21it's nice seeing you all out
37:23baby it's still time to shine
37:25so finally frog legs
37:27has retired
37:29and we can party now
37:31without worrying about what people think of us
37:33what you doing comes
37:34my new legs
37:35new legs
37:36new legs
37:37new frog legs
37:38new frog legs
37:39hips don't lie
37:41baby the clock is ticking
37:43you need some churn
37:45oof
37:46that's how you cook
37:47and the mates
37:48no more excuses
37:49it's time to get back out there
37:53oh she's cute
37:56she's cute
37:57she's cute
37:58come on boy
37:59why would you wait now
38:00you are
38:00I'm Curtis
38:01Curtis Felicia
38:03nice to meet you
38:03nice to meet you
38:04Julian
38:05yeah
38:05what are you ordering
38:07a spicy margarita
38:09spicy
38:09yeah
38:10that's how you feel
38:10always
38:12oh
38:13that's a draw
38:15that's interesting
38:16so
38:17are you dating?
38:19not at the current moment
38:20just
38:20couple situations
38:21that I had to get over first
38:23so I was
38:25prescribed medication
38:26that
38:26took my skin color
38:27and my hair
38:28so
38:28I mean I think it gives you
38:30extra cool factor
38:34he's back
38:35back like he never left
38:37that's the crowd pleaser
38:38I'm going to get over first
38:39hi
38:41how are you?
38:42you've got great energy
38:44it's a confidence
38:45that was probably buried
38:46deep down for
38:47almost a decade
38:48and to
38:50feel that again
38:51is just liberating
38:52oh my god
38:53spread it
38:53because I feel it
38:54through you
38:55appreciate you
38:56thank you
38:56I feel
38:57a hugger
38:58check out your boy
39:00yeah
39:00new legs
39:02yeah
39:02see me in the store
39:04oh
39:04Curtis quince coming down
39:06and I'm in this dish
39:07oh
39:07chillin' with the car
39:09and we got sin in this dish
39:10get up
39:11oh
39:12oh
39:13oh
39:14oh
39:15the last time I stopped out in the bar dancing was probably 2016 2017
39:20I haven't felt this liberated or this free
39:22kind of just you know move around you know
39:25I'm just so happy that Curtis finally coming out of his shell again
39:28it's been so many years
39:30Curtis back
39:31Curtis back
39:33I'm sorry I'm all over the place I'm so happy
39:46hello
39:47how's it going
39:48hey guys
39:48her record is 1420 feet
39:51which some people might not think that's much
39:54but for anybody going through what she's going through it's a tremendous amount of walking
39:59okay ready
40:00and not holding on to anything
40:01no walking aids
40:03no parallel bars
40:05just stand in front of me please
40:12that is good
40:13don't touch my bars
40:14I won't touch the bars
40:16I know
40:17oh god
40:21hey dad
40:22hey
40:22you got it
40:24you got it
40:24that was really good
40:26that was really good
40:28she will go to a point where she's completely exhausted
40:31and then there's also a point where she's also like
40:34like
40:34I can't do this
40:36okay hold on
40:37oh my god
40:38how many feet is that
40:431560
40:441560
40:45I did it
40:45I did it
40:47oh my god
40:48oh my god
40:52what the heck
40:52what the heck
40:56yay
40:57yay
40:58I feel like I'm making a ton of progress right now
41:01and that's great
41:03you know we have our bad days that happens
41:06we're gonna figure it out together
41:08I loved her before
41:10I loved her before
41:11but
41:12I didn't really know
41:13what true love meant
41:15until this really happened
41:17cause
41:18you don't know
41:19how much you actually care for a person
41:21until something traumatic happens
41:23and you have to be there for them
41:25you know
41:29I couldn't do life without her
41:30she's
41:31my rock
41:32stop
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