01:00:00:19 §
01:00:09:18 Renee Rodrigues has Congenital Muscular Dystrophy
01:00:13:10 She lives with a tracheotomy, a feeding tube in her stomach,
01:00:18:10 a 500 lbs. wheel chair
01:00:21:00 and constant pain.
01:00:23:11 None of that stops her.
01:00:25:11 Renee has a passion for life and for helping others.
01:00:28:19 She is a blogger, an author,
01:00:31:18 a web moderator and a charity organizer.
01:00:35:06 Renee makes a difference in this world.
01:00:39:10
01:00:42:02 I'm Renee Rodrigues.
01:00:44:00 I'm nineteen years old and this is basically my life
01:00:48:00 story so if you don't like it, suck it up princess.
01:00:52:14 Okay that was good.
01:00:55:16
01:01:01:03 "911 What's your emergency?"
01:01:03:08 Ambulance please...
01:01:05:20 I have a 20 year old young lady on a ventilator,
01:01:09:02 she's got muscular dystrophy with chronic
01:01:11:12 lung disease and she's having problems breathing.
01:01:14:15 She's on ventilin, pulmocortin, tobermicin
01:01:18:17
01:01:20:09 Yep, chronic lung disease...
01:01:22:02 Yep, she is...
01:01:26:04
01:01:29:27 Okay...
01:01:31:04 Mark!
01:01:32:05 You know you could help in assisting us as we are
01:01:34:20 trying to get everything ready for the nurse
01:01:37:10 Okay what do you need?
01:01:38:24 What do I need?
01:01:40:07 Yes, what do you need?
01:01:41:12 A shot in my head right now.
01:01:43:12 Are you okay, what's wrong?
01:01:46:08 Oh, don't cry, don't cry.
01:01:48:08 I'm scared
01:01:50:11 What?
01:01:51:28 I'm scared
01:01:54:26 You're scared of what?
01:01:56:29 No crying, huh?
01:01:59:05 Crying's not good for you.
01:02:01:22 You'll come back today. Shapadish,
01:02:03:26 that's theambulance calling
01:02:06:20 You'll be fine, you'll be fine, I promise
01:02:09:24 Yes, don't get scared cuz then your going to scare me
01:02:13:21 I promise. I promise.
01:02:17:24 You'll be fine, if you need bone marrow I'll give it to you.
01:02:21:10 giggles, what is that?
01:02:24:05
01:02:30:16 Will you turn this off please?
01:02:32:12
01:02:36:10 I heard the sirens ringing.
01:02:38:00 It's just been too many to count,
01:02:39:25 buzz up and let them in,
01:02:41:21 wham bam, and off she's gone again, so...
01:02:45:22
01:02:48:15 Renee is an angel on earth.
01:02:50:27 I believe that there's certain angels um that go
01:02:54:04 to heaven and watch you from heaven and there's
01:02:55:23 certain angels that are walking on this earth.
01:02:58:09 And I believe that Renee is one of them...
01:03:01:12 she chose to fight and stay in this world,
01:03:04:08 so to me that shows that she has more to do.
01:03:08:14 She's not finished here.
01:03:11:01 And for me that's hope.
01:03:13:07
01:03:18:29 I was born in 1966 in Portugal, St. Michael's Azores,
01:03:23:19 and I came to Canada in 1973.
01:03:27:16 I had Renee when I was 21.
01:03:31:05 not long after I got pregnant with Marco.
01:03:35:10 They've been stuck to me like glue!
01:03:39:15 She wasn't crawling and I mean she started speaking
01:03:44:10 very early, um, so that wasn't an issue,
01:03:47:21 but the physical aspect was,
01:03:49:21 so it was very frustrating to know that there is
01:03:51:21 something wrong with your child and,
01:03:54:02 nobody believes you...
01:03:55:13 But at the time I was going through some really
01:03:57:12 rough times and It took me going to Portugal,
01:03:59:16 living there, and seeing a specialist there for
01:04:02:10 somebody to actually say you know what this child
01:04:05:12 does not just have asthma, there is something beyond
01:04:07:24 this, and you need to go back to Canada and here's
01:04:10:11 the information I'm going to give you.
01:04:12:19 that went to another Doctor and then another doctor and
01:04:15:12 then that doctor finally found out what was wrong with her.
01:04:19:20 When I first found out what Renee had,
01:04:22:19 it was like a stabbing pain to my heart.
01:04:27:13 I had to take some time off and just think and
01:04:31:11 concentrate and um I just basically came to the conclusion
01:04:37:04 that it was just another challenge and we could do it.
01:04:40:10 It was really hard 'cause I was by myself and um,
01:04:44:01 but we did it. We did it.
01:04:49:06
01:04:55:27 More than 250,000 people in North America have Muscular Dystrophy,
01:05:00:29 a group of degenerative diseases
01:05:03:18 causing muscle weakness and other symptoms.
01:05:06:15 Renee has Congenital Muscular Dystrophy which
01:05:10:20 starts at birth and slowly progresses.
01:05:13:10 There is no known cure.
01:05:16:14 Her muscles don't absorb nutrients like yours and mine.
01:05:22:04 Um, she has, because the lungs are a muscle,
01:05:26:11 she has problems breathing,
01:05:27:16 so she has to have a trachea to help her breathe.
01:05:29:26 Um, because she doesn't have the nutrients that
01:05:32:24 that she would be able to get from food,
01:05:35:08 she has to have supplements which will
01:05:37:29 give her the calories to keep her alive.
01:05:40:10
01:05:45:27 Her body is a fighting battle.
01:05:47:05 It's just a battle, its a battle, everyday,
01:05:48:24 everyday is a battle for her.
01:05:50:25 Renee's latest battle is with a painful gallstone.
01:05:54:24 She fights to survive while the doctors determine
01:05:58:19 whether they can safely remove it.
01:06:01:03 Every day her pain increases and her liver enzyme levels rise dangerously.
01:06:07:25
01:06:09:04 The reality is, she fought hard and she's here,
01:06:12:11 and she's my little piece of heaven ...
01:06:14:29 she's my little piece of heaven in this sometimes rotten world,
01:06:19:21 and...I can't see her going, I can't,
01:06:26:26 it would break my heart, it really will, she's my joy,
01:06:33:07 sorry....
01:06:35:20 so yeah, she's, she's one of a kind, there's nothing like her.
01:06:42:23
01:06:45:02 §
01:06:55:03
01:07:10:03 I have so many good people surrounding me, you know,
01:07:14:07 like here's a circle, here's Renee,
01:07:17:03 and here's all the people around me,
01:07:20:05 and they kinda like, you know they help me,
01:07:22:11 and they hug me in this little circle.
01:07:25:02 There's mommy in my circle,
01:07:28:01 We'd finish off each other's sentences,
01:07:32:12 thoughts, what we might want to do tomorrow.
01:07:36:28 It's really scary. It is...
01:07:39:04 I'd go into her and room and she'll go
01:07:41:21 'how did you know you were calling - I was calling you'
01:07:43:13 and I'm like 'I just thought you were calling me'
01:07:45:20 and meanwhile she wasn't calling me.
01:07:47:15 So it's like that kind of connection.
01:07:50:06 You're so cute
01:07:52:02 Thanks I try
01:07:53:28 You're fatheaded too aren't you?
01:07:56:15 Shut up (under her breath)
01:07:58:23 Markie, that's my brother.
01:08:00:24 His real name is Marco, but we've got a little nickname going on...
01:08:04:14 so we call him Markie.
01:08:06:11 She's always had this personality that was like,
01:08:09:05 I don't know you,
01:08:11:05 you're not my brother, specially in school,
01:08:13:11 and she-it was just a joke - but it was so funny...
01:08:15:18 cuz she'd be like who are you again?
01:08:17:26 I'm your brother.
01:08:19:18 And then, there's Rojae.
01:08:22:28 He's my brothers friend, but now we kind of adopted
01:08:27:01 him into our family, so he's kind of a brother.
01:08:30:15 I would say I'm really good friends with Renee.
01:08:35:29 I spend a lot of time with her.
01:08:38:04 We get cans of pre sliced pineapples and I'll have the
01:08:42:21 pre-sliced pineapples and she'll just take the can from me and
01:08:45:26 drink the pineapple juice straight from the can ..
01:08:48:23 and her and I will just sit and we'll just look
01:08:52:06 right at each other, and then we'll laugh..
01:08:54:15 we do a lot of that...
01:08:56:00 laughing and talking, it's what we do best
01:08:59:06 Then you have Grandma
01:09:03:04
01:09:05:03 And then well my grandfather but then he passed away,
01:09:08:05 but you know, he still watches me
01:09:11:13 (translated) Look over here,this is for her!
01:09:14:02 We had this really strong relationship -
01:09:17:06 like I didn't see him that often but when I did see him
01:09:21:14 it was like he's here - YAY!
01:09:24:06 (goat baaing)
01:09:25:27 I never had a Dad in my eyes so for me..
01:09:31:10 he doesn't exist ... its like being born without
01:09:35:12 another parent you don't know what your missing.
01:09:41:08 So who needs a Dad? They're overrated...
01:09:43:27
01:09:48:05 Renee's circle of friends and family
01:09:51:04 have inspired her to write her life story.
01:09:54:07 Her writing reflects her sense of humour and strength.
01:09:58:06
01:10:01:03 Every once in a while when we're in the kitchen,
01:10:02:28 she would come and she would sit there
01:10:04:17 and she would like.... babble.
01:10:07:05 Basically babble, the hospital did this,
01:10:09:19 blah, blah, blah
01:10:10:25 and then I'd start laughing because she would turn it into a joke,
01:10:13:12 right, And after awhile, I thought to myself,
01:10:15:22 she should write this stuff down.
01:10:17:28 Now she does poetry.
01:10:19:19 She was always great in school with writing.
01:10:22:06
01:10:29:18 When I was in grade 2 I had my first holy communion.
01:10:33:04 I had a dress fit for a little princess.
01:10:36:04 My best friend and I made speeches at the communion ceremony.
01:10:39:13 My house was full of friends and family.
01:10:42:22 The party was awesome.
01:10:46:06 We danced, ate and opened presents.
01:10:50:01 After the party I got a runny nose.
01:10:52:20 It went from sniffles, to strep throat,
01:10:55:00 to a nasty chest infection.... I couldn't sleep at night.
01:10:58:11 Mom stayed up with me.
01:11:01:19 It got worse.
01:11:04:10 I began choking.
01:11:06:07 When I couldn't breathe for a few seconds,
01:11:07:20 Mom called a taxi.
01:11:09:24 The driver rushed us to the hospital.
01:11:11:18 I ended up in the Sick Kids Critical care Unit,
01:11:15:05 where they wanted to switch me to a new
01:11:17:00 breathing machine called a BIPAP.
01:11:19:06 What basically it does it blows
01:11:22:12 air into your lungs, and um,
01:11:25:01 she wouldn't stand for it, so I had to literally hold
01:11:30:16 her down on top of me and she got so angry at me,
01:11:34:15 I've never, I had never seen her that angry at me
01:11:37:12 before in my entire life, like, it was,
01:11:39:17 it was sad because I wanted to cry,
01:11:41:27 but at the same time you have to stay strong
01:11:45:23 I was eight.
01:11:47:24 Tiny little thing. Very angry.
01:11:50:22 They called me into a room and basically said
01:11:54:00 you know she's not taking the machine, so that
01:11:57:17 basically means she's not going to make it through the night
01:12:00:09 And that's when they forced it onto me.
01:12:03:09 Let's just say I never cried so much,
01:12:05:26 yelled or called people names like that in my life.
01:12:09:13 It was not pleasant.
01:12:11:17 But eventually I got used to the machine and used it for sleeping like I was told.
01:12:17:06
01:12:18:16 It ended up becoming my best friend because it kept me alive.
01:12:24:21 Hi Vovo
01:12:27:08
01:12:29:00 Sometimes I would even jump on my bed,
01:12:30:24 pretending I was an astronaut.
01:12:33:04 It was fun!
01:12:34:19 Woohoo!
01:12:36:23 §
01:12:46:26 A lot of times I'm scared,
01:12:48:19 a lot of times, you know there's that, that fear,
01:12:51:07 like what if you're not gonna make it,
01:12:53:13 after the surgery or what if something bad's gonna
01:12:56:06 happen and then, I don't know, I just get,
01:12:58:29 I worry you know...
01:13:01:17 I worry a lot, a lot more than people even know.
01:13:05:19 "It's cold, ooh"
01:13:10:15 After months of waiting, Renee, Edite and her nurse
01:13:15:17 are going to meet with Dr. Hart, the gall bladder specialist.
01:13:18:13 Today's purpose for my visit is because I have a gallstone
01:13:26:10 and I've had it for six and a half months,
01:13:30:25 which is a very long time of pain and sickness.
01:13:34:03 So the first appointment was consultation and then
01:13:39:10 this appointment is the pre op.
01:13:42:06 Gotta ask a lot of questions you know.
01:13:45:18 Gotta make sure the things are all ready
01:13:49:07 What kind of questions did you come up with?
01:13:51:24 The good ones.
01:13:53:11 What they're gonna do to me--cut me open.
01:13:59:23
01:14:07:05 This is the worst.
01:14:08:24 The drive there, it's so intense.
01:14:11:20 It's like, what's gonna happen?
01:14:13:12 What are they going to say?
01:14:15:04 Ugh.
01:14:16:16 It's scary.
01:14:18:10 But I'll be okay.
01:14:20:15
01:14:24:19 It's raining, it's pouring...the old man is snoring...
01:14:30:08 it's freezing, it's freezing and it's raining...(singing)
01:14:35:25
01:14:38:04 Kay, kay, now I'm nervous.
01:14:40:26 Officially.
01:14:43:24
01:14:54:01 It's cold.
01:14:56:27 Come on Renee...RUN!
01:14:58:26 YAY!
01:15:03:21
01:15:06:07 Ugh, Kay where are we going?
01:15:08:10 Kay where do we go Mom?
01:15:11:20
01:15:15:19 Renee and Edite are deeply disappointed.
01:15:18:21 After hours of tests, Renee's specialist is
01:15:22:21 still not prepared to commit to gall bladder surgery.
01:15:26:05
01:15:27:24 In the meantime, Renee's liver condition worsens
01:15:31:00 and her pain increases.
01:15:33:08
01:15:57:18 Most of my strength comes from my Mom because she was the one
01:16:02:08 who put it in my head that no matter what happens,
01:16:05:21 you gotta keep going, like, okay,
01:16:08:26 yeah you fall its gonna hurt,
01:16:10:21 and with me I was fragile so it's worse,
01:16:13:25 but at the same time, wasn't the type of person to cry a lot.
01:16:19:08
01:16:27:01 They used to be like,
01:16:28:13 why so mean, she's such a little girl,
01:16:30:28 she's so fragile, blah, blah, blah, blah
01:16:33:22 My Mom's like "whose kid is she, yours or mine?"
01:16:37:12 (laughs)
01:16:40:08 I had a lot of fights in the beginning
01:16:41:26 but I was told one way is you either put her in a bubble
01:16:44:13 and she's not going to do anything or you let her be a normal child,
01:16:46:27 as normal as possible and I chose that part.
01:16:49:13 I chose the part of letting her be as normal as possible,
01:16:52:25 and She's adapted.
01:16:54:26 She's adapted all her life to everything, so...
01:16:57:04 She used to kick the ball, she used to walk,
01:16:59:03 she used to go up and down stairs, she used to roll,
01:17:01:04 ah, climb the monkey bars, go down the slide,
01:17:03:14 even if I had to go down with her, she still went.
01:17:05:27 So - I always made sure that she tasted and
01:17:09:02 touched and felt and was really able to say you
01:17:14:02 know what, I might not be able to do this,
01:17:16:05 but I've already done it.
01:17:17:23 But I love you
01:17:19:13 - I love you!
01:17:20:24 Come on, put some wine in there.....I want some wine,
01:17:24:01 come on, come on show them what you got
01:17:26:16
01:17:29:02 Vovo, I love you and you look so beautiful
01:17:30:23
01:17:39:17 One summer day when I was 13,
01:17:42:01 I was excited because I had plans to go to the circus.
01:17:45:05 It was a big day for me because I was also
01:17:47:10 scheduled to receive my first motorized wheelchair.
01:17:49:29
01:17:51:13 she was using a walker at the time,
01:17:53:23 she was slowly not able to walk and she said,
01:17:56:05 ah, "They're making a wheelchair for me,
01:17:59:07 and they gotta shape it for my back",
01:18:00:25 and all that, and ah, I said to her, not thinking,
01:18:03:15 not thinking who this is I'm talking to, I said,
01:18:05:14 "Oh that's great, that must be very exciting for you",
01:18:08:25 and she turned to me and said,
01:18:10:18 " If you think it's so great, do you want one?"
01:18:12:27 Ever since then, I've never talked to her like a child.
01:18:17:12
01:18:20:10 The day before my circus trip,
01:18:22:04 my dreams for a perfect day turned into a nightmare
01:18:24:27 I had bad chest pains and was rushed to the hospital.
01:18:28:08
01:18:29:08 I thought it was normal growing pains.
01:18:30:27 Was I wrong!
01:18:32:16 I developed air pockets in my lungs and the doctor
01:18:35:01 had to insert a glue-like liquid in my lung lining
01:18:37:13 to prevent the air pockets from popping.
01:18:40:19
01:18:46:17 You know that feeling people get when they're in
01:18:48:10 trouble and they say 'I'm going to die I'm going to die'?
01:18:51:23
01:18:53:10 That was how I felt.
01:18:55:04 I get a call from the hospital saying you gotta get back here.
01:18:58:23 There's an emergency with Renee.
01:18:59:26 They won't tell you any information.
01:19:01:17
01:19:04:21 I had a couple of surgeries and they gave me morphine.
01:19:07:16
01:19:08:28 And one of our friends comes to me
01:19:13:28 and he gives me a hug and he's crying and he's like,
01:19:15:25 how can she do this to me, and I'm saying
01:19:18:10 "What do you mean how can she do this to you?"
01:19:20:25
01:19:23:25 While I was waiting to go back to my room, I went code blue.
01:19:27:02 (flat line)
01:19:31:04 And the room is full of people,
01:19:32:14 and I see on the door Code Blue.
01:19:34:07 Code Blue means she died.
01:19:36:06
01:19:40:29 And I swear, it like literally didn't feel like anything
01:19:44:25 I just thought I took a nap and everybody was freaking out.
01:19:48:25
01:19:55:23 I used to take four cans a day,
01:19:58:25 but because of the stone, this is high fat,
01:20:01:07 so I cut back, so that the stone doesn't get irritated..
01:20:04:20 With this type of disability,
01:20:07:01 you burn a lot of calories with the breathing and the
01:20:09:27 stuff you do every day, so this is to help you to
01:20:13:13 maintain your weight and keep healthy.
01:20:16:25 See most people want to lose the weight so they're like
01:20:20:06 "I lost 5 pounds I'm so excited...
01:20:22:05 I'm like I gained ten I'm so excited!
01:20:25:14 Yeah..."
01:20:27:11
01:20:28:26 Well I have to be careful with
01:20:30:22 Tylenol and stuff because the liver,
01:20:32:24 my liver function, is kind of ah, not so good...
01:20:38:10 ow....like now.... now....phhh...
01:20:42:22 don't worry you can film this, this is my life
01:20:47:03 phhh.....phhh ... pain gone...
01:20:54:05 Renee copes with pain from morning to night.
01:20:58:14 Sometimes it's her lungs and other times it's her ingrown toenails.
01:21:03:04 Right now it's her liver.
01:21:06:01 Sometimes it is everything all at once.
01:21:09:09 LA, LA, LA, LA, Did it
01:21:13:10 help?
01:21:15:15 No
01:21:16:15 Ooooh...
01:21:18:03 Do I ever get angry and frustrated with my disease?
01:21:20:26 Yeah...
01:21:22:00 Yelling and screaming is my way of coping with that.
01:21:25:25
01:21:27:00 I vent, I tell people off, I go and I complain.
01:21:30:05 She's good, but then when she gets mad
01:21:32:29 she turns into another person kinda like devil angel.
01:21:35:21 She kicks the angel away and she becomes "VENEE"
01:21:38:26 You don't want to see her when she becomes Venee.
01:21:41:01 §
01:21:42:27 I love you (giggles)
01:21:44:27 Renee can I take a picture with You?
01:21:46:26 Yes, you may
01:21:48:24 I'm stubborn, hard-headed, very determined,
01:21:51:26 but that's how I get through my life.
01:21:56:23 I'm proud.
01:21:58:07 And I'll tell you why.
01:22:00:09 Because they said she couldn't do a lot of things.
01:22:02:13 She wasn't going to be able to.
01:22:03:26 And I hate this You Can't, You Won't.
01:22:05:14 That just doesn't sound like something you should teach your child.
01:22:09:12 ....You can't, you can't, you can't, you can't, you can't.
01:22:11:14 Who's to say you can't?
01:22:13:26 Who's to say you won't?
01:22:16:10 Doctors are doctors and they're good
01:22:18:07 and we were blessed with very good doctors.
01:22:20:08 But at the same time, who are they to say that she's
01:22:23:09 not going to make it?
01:22:24:25 Or she's not going to do this and she's not going to do that?
01:22:27:06
01:22:28:10 § It's just the world that we live in §
01:22:31:25 § It's tough this place ain't forgiven §
01:22:35:15 § Suck it up Princess, suck it up §
01:22:36:25 §
01:22:37:26 § Suck it up Princess, suck it up §
01:22:39:18 §
01:22:41:08 § Suck it up Princess, suck it up §
01:22:43:13
01:22:56:15 In 2002, I had my confirmation and graduated from grade 8.
01:23:00:21 That summer, I got a trachea,
01:23:02:09 a ventilator and a suction machine.
01:23:05:00 I was 14.
01:23:08:12 One day I was brought to
01:23:11:02 the hospital, "Renee's in the hospital", like, why..."
01:23:14:02
01:23:16:05 She's got a trachea...I'm like,
01:23:17:15 "What do mean she's got an trachea"...and I flipped.
01:23:19:26 ...you know it was like...I don't want them
01:23:22:17 to put a hole in my sisters neck!
01:23:24:20 laughs...
01:23:26:04 I was very mad, it was like "if the doctors touch you
01:23:28:03 I will...go crazy!"
01:23:30:04 At the hospital, they put a mask on my face
01:23:33:28 claiming that it smelled like cherries.
01:23:36:07 It felt more like they got a jackhammer,
01:23:39:07 stood on the bed and used it on me till they were satisfied.
01:23:42:20
01:23:43:28 And the ventilator, it isn't some big fancy
01:23:46:23 machine; it's nothing more than a leaf blower
01:23:49:06 with fancy recycled plastic.
01:23:51:17 Plus - the suction machine is no more than a vacuum
01:23:55:14 motor with a nice case.
01:23:57:04 Well despite the dumb gear,
01:23:59:17 I've learned that I should just give in and let them
01:24:02:09 do what they want .... I don't care
01:24:06:19 as long as I wake up.
01:24:09:13 That's very important you know.
01:24:12:01 She has never stopped herself from doing anything.
01:24:16:00 She doesn't give up.
01:24:18:05 She learned how to talk...(quietly)
01:24:20:23 She goes ..." HI"
01:24:22:22 That's how she'd do it, and she,
01:24:24:12 she figured a way to use the air that's being
01:24:27:16 forced into her lungs to allow her to talk because
01:24:30:12 the majority of people use this little piece on their
01:24:33:18 neck that allows them to talk,
01:24:36:11 but they have the muscles to allow themselves to breathe.
01:24:39:19 Renee's machine helps her breathe, you know,
01:24:42:21 it doesn't breathe for her but it actually
01:24:46:04 forces air in and out of her lungs.
01:24:48:11 That's why she cant smell either,
01:24:50:17 because she's got this constant, you know,
01:24:52:23 breathing, you know, and its not from here,
01:24:55:21 its from here, so She's lost some of her senses,
01:24:58:12 but she can talk like a maniac!
01:25:02:17 I tell everybody she's my niece,
01:25:05:19 I treat her as if she was my niece,
01:25:07:10 I love her as if she was my niece.
01:25:09:07 I think when I was pregnant cuz I had like a total nervous
01:25:11:07 breakdown when I was pregnant with my 3rd child...
01:25:13:14 everybody was like against it almost
01:25:15:03 Renee was the only person that stood by and said...
01:25:17:23 I said go with your heart
01:25:19:20 she was like a sign from God...
01:25:21:00 she goes "Everything's going to be fine, everything's gonna be",
01:25:22:23 and she was saying this to me, every day repetitively...
01:25:25:23 Again, just I would sit there and say
01:25:27:06 "This child is like Dr. Phil...in a little woman's body!
01:25:30:25
01:25:33:11 She has a lot of friends And she has a lot
01:25:35:12 of people that care about her and she knows that
01:25:37:05 Renee's so confident and so conscious of everything
01:25:41:11 of everyone so, I think that helps her get through everything
01:25:44:29
01:25:48:28 The online friendships and
01:25:50:05 physical friendships- there really isn't that
01:25:52:29 much of a difference because as long as you
01:25:55:26 know the person from talking,
01:25:57:29 and it's the same thing, like you talk to your
01:26:00:26 friends in person, you talk to this person
01:26:02:29 online, its exactly the same thing,
01:26:05:07 you know about each others lives,
01:26:07:25 you talk to each other all the time, Happy Birthday,
01:26:10:20 Good Night, I love you, that kind of thing,
01:26:14:27 its like almost the same, the only difference is
01:26:17:22 there's a computer screen in the middle.
01:26:20:14 Renee is always on that thing sometimes
01:26:22:15 she has 10 conversations with like 10 different people
01:26:25:00 and I look at her I say "Do you really know
01:26:27:22 what you are saying to all these people,
01:26:29:03 she's like "No no Mom, this is very important,
01:26:30:29 I keep track, I am very on top of things."
01:26:33:19 I don't want them to like me for the disability,
01:26:37:10 I want them to get to know my personality
01:26:41:07 first, and then its like, oh yeah,
01:26:44:14 by the way, I have an illness, you know,
01:26:47:02 I just kinda spring it on them.
01:26:49:11 A lot of people just go to her with their
01:26:52:13 problems cuz she's really easy to talk to and she is
01:26:54:12 very blunt so she'll tell you exactly what to do.
01:26:59:13 It stresses her out a little bit but she loves,
01:27:02:12 you know, like talking and helping out,
01:27:04:07 and seeing a difference being made.
01:27:06:10 I see it, cuz I do it.
01:27:10:14 And I help people and sick or no sick,
01:27:12:17 do what I do but at the same time its like people
01:27:15:10 make a big deal out of it...and for me
01:27:20:19 it's...isn't that what you're supposed to do?
01:27:24:07 Help people?
01:27:26:00 For me its normal...For everybody else its like,
01:27:28:11 its a big deal.... she's helping people
01:27:31:11 Renee likes to help people.
01:27:34:22 She's gained recognition by organizing charity events.
01:27:39:02
01:27:40:14 I am famous....
01:27:41:21 I became famous through all the charity work.
01:27:45:24 Literally it went from knowing a nurse,
01:27:49:25 to meeting a music producer,
01:27:52:12 to joining a charity event,
01:27:55:11 to becoming a member of this charity,
01:27:58:11 to becoming a special correspondent for the charity.
01:28:02:11
01:28:04:12 Working on a benefit with young philanthropist
01:28:07:08 Hilary Duff was a high point for Renee.
01:28:09:26
01:28:10:29 "Hi my name is Renee Rodrigues
01:28:12:10 and I was just wanting to say thank you
01:28:13:27 and I think it's a wonderful charity and Hilary Duff
01:28:16:29 is so thankful that,
01:28:19:09 you know we like her to help us and it's hard living
01:28:21:25 with disabilities but everyone still seems to hold on
01:28:25:02 so, thank you all for coming...
01:28:28:26 ...and keep smiling!
01:28:31:03
01:28:36:10 The media, for some reason they always picked me.
01:28:40:12 There was an event or some sort of special presentation
01:28:45:21 for Hilary and in the charity section there's a
01:28:49:21 picture of me and her ...
01:28:51:24 ..the media loves me...
01:28:55:23
01:28:58:13 So we decided to ask about a wheelchair...
01:29:01:16
01:29:03:09 For many years Renee has been an ambassador
01:29:05:13 for Sick Kids Hospital.
01:29:07:12 She's also organized her own fundraiser's for them.
01:29:10:02 She was only 14 when she appeared in this video.
01:29:13:16 And that's what I tell
01:29:15:17 everybody especially cancer patients and stuff
01:29:17:29 I tell them - you can't just think of all the bad stuff.
01:29:21:28 Think of what you've already done that's good
01:29:24:10 or what you would like to do that's good and try to do it!
01:29:27:16
01:29:39:00 Renee was as a judge for the "I Can" contest,
01:29:41:20 run by Ability Online, an Internet community
01:29:44:15 for young people with disabilities and illnesses.
01:29:48:00 It was um, close to the heart...
01:29:50:24 My Mom always said to me
01:29:53:04 "Never say you can't, always, "I Can"
01:29:56:12 Participants were asked to describe why "they can".
01:30:00:17 The winner won prizes and attended The Rock With
01:30:04:00 Jake Event in Support of Jacob's Ladder
01:30:07:08 and the Sick Kids Foundation.
01:30:09:21
01:30:12:03 Oh it's the new white one.
01:30:14:22 Hey miss, miss.
01:30:16:11 Renee helped plan and promote a fundraising event with Raven Symoné.
01:30:20:25 They raised over $75,000 for Children's Miracle Network.
01:30:25:20
01:30:26:27 More than 30 kids lived their dream of meeting Raven.
01:30:29:27
01:30:32:08 Getting involved with celebrities has changed
01:30:35:02 my life in the sense that, see for me,
01:30:38:27 the celebrities are just regular normal people
01:30:43:01 doing charity work with me and having a good time
01:30:47:20 You guys ready for Shawn Desmannnnn!
01:30:49:19 Woooo....this is amazing look how many people are here,
01:30:53:05 everybody going crazy, this is incredible,
01:30:54:15 give yourselves a round of applause...
01:30:56:06
01:30:59:24 Everybody around me and my social circle,
01:31:02:23 they're like Oh my God you met Hilary Duff,
01:31:05:26 or Oh my God, you met Ashlee Simpson,
01:31:08:26 or oh my God you saw Shawn Desman
01:31:11:06 Alright. Boom, Boom. We are here now.
01:31:12:28 How long have you guys known each other?
01:31:14:04 Long time?
01:31:15:10 Wow, it's a long time. At least five years.
01:31:17:23 Right?
01:31:18:29 Yeah.
01:31:19:29 At least five years.
01:31:21:05 You are so well connected Renee, such a celeb.
01:31:23:02 She is...more than I am! She knows more people than I do!
01:31:25:04 Yeah
01:31:26:04 If you look like on her web site and all that
01:31:27:12 see all the pictures of people she has
01:31:28:21 I don't even get pictures of those people!
01:31:29:28 laughs
01:31:32:16 §
01:31:44:21
01:31:58:02 Along with her writing and charity work,
01:32:00:14 Renee is a web designer and moderator for
01:32:02:22 independent artists and TV producers.
01:32:05:07 One of her favourite projects was the Hip Hop in the T-Dot web site and MySpace page.
01:32:10:25
01:32:14:15 Renee operates Hip Hop in the Tdot's uh, Facebook, web site.
01:32:20:26 The guru.
01:32:21:28 She's our Internet guru.
01:32:23:27 'How do I do this?'
01:32:26:05 Send.
01:32:27:15 You know, ah, she's the voice in the nether space.
01:32:30:14 'It's okay, it's okay'.
01:32:33:11
01:32:38:20 I like that type of music, I love dance
01:32:42:14 and I think choreography is really good and
01:32:46:08 I'm so used to dealing with web sites and email and all
01:32:50:20 these different contacts that I figured
01:32:52:21 be good help for them, be good for me so that's what I did.
01:32:55:12 Where did you learn all that? Where did you learn all your tech?
01:32:59:07 I taught myself.
01:33:00:12 Really?
01:33:01:13 Yeah.
01:33:02:13 Do you have a whole setup at home?
01:33:03:28 With all your like, computers and...?
01:33:05:08 No, its just, it's all in my head.
01:33:08:24 Just one tiny little laptop
01:33:13:14 Kay basically , the whole moderating sites and promotion
01:33:18:01 came because I had a couple of friends like Shawn Desman
01:33:24:03 and his brother, um, this guy named Wiz Kilo.
01:33:29:08 There's a bunch of different people.
01:33:31:17 Some of them I met through the other people's profiles.
01:33:35:12 Like I'll be on Shawn's profile and be like,
01:33:39:08 Oh this person looks interesting, click,
01:33:42:03 and then I see that they're a really good singer,
01:33:44:12 and my point of it is they deserve recognition..
01:33:48:27 So I make like, fan groups, fan pages,
01:33:53:18 and all these things and I'll update them and
01:33:56:27 basically I talk to the artist,
01:33:59:15 get the information then, and then update the profile,
01:34:02:23 that's it.
01:34:05:08 My work is my therapy, yeah it is.
01:34:09:07 It's my escape.
01:34:11:06 When I want an excuse, I'm working.
01:34:13:19 When I'm in pain, I'm working.
01:34:15:10 Everything is I'm working, I'm busy, excuse me.
01:34:19:15
01:34:21:24 What's up?
01:34:23:28
01:34:27:23 Actually, MySpace was the way we met.
01:34:29:23 Uh-huh
01:34:30:24 and then I also started a group on Facebook.
01:34:32:26 So I have a group on Facebook and she adds the
01:34:35:06 pictures and makes sure there's no rude messages on the message box and
01:34:40:02 That's right.
01:34:41:16 And invites people into the groups.
01:34:43:22 Uh-huh
01:34:45:05 It's fun.
01:34:46:28 It is my passion.
01:34:48:08 Work is a very big thing it makes me feel like this
01:34:51:08 stuff doesn't exist, you know?
01:34:53:05 That I'm just a regular person in an office, doing my job.
01:34:56:07
01:35:00:24 Renee uses her work as an escape,
01:35:03:06 but she can't escape her gallstones.
01:35:05:09 Two months after her last appointment,
01:35:08:22 Renee goes back to the hospital to see Dr. Hart.
01:35:12:10 This time she hopes for answers.
01:35:17:01
01:35:21:07 welcome back.. I know it's taken a
01:35:23:18 little bit of time and certainly part in parcel
01:35:25:17 of that is us reviewing the films...
01:35:27:12 Dr. Hart tells Renee that her gall bladder removal has been approved.
01:35:30:02 you would benefit from having your gallbladder taken out, and...
01:35:34:02 In another month they will perform an "open Cholecystectomy".
01:35:38:25 Renee and her mother are visibly relieved.
01:35:42:04 If you try to lay her flat she's got a huge gap.
01:35:44:15 She has a scoliosis.
01:35:46:08 I mean.
01:35:47:13 You know once we place her on the bed,
01:35:48:21 we'll be able to see where she's gonna need the most
01:35:50:24 padding so that she's, you know...
01:35:52:16 Yeah cause if she's uncomfortable,
01:35:54:12 then on top of that, you're doing the surgery,
01:35:56:26 she's gonna be double, in stress.
01:35:58:23 You don't need to worry,
01:36:00:12 you don't need to worry, about that at all.
01:36:02:02 Sorry, it's the mother in me.
01:36:04:18 No, no. And those are very valid concerns.
01:36:06:13 So, again, I mean, we're going to be doing
01:36:08:12 everything to, to...make it...
01:36:10:09 the least amount of stress for Renee.
01:36:12:05 Now that the operation has been scheduled
01:36:14:08 Renee faces her next hurdle,
01:36:17:02 will her weak lungs and fragile body survive the surgery?
01:36:24:14
01:36:42:21 Two months ago, Renee's gall bladder was successfully removed.
01:36:45:26
01:36:48:25 She is slowly recovering from the surgery.
01:36:51:18 Nine months of pain and irritation and nausea
01:36:57:06 and ...like she said...it was like having a baby.
01:37:00:26
01:37:04:04 Against all odds,
01:37:05:23 Renee is turning twenty today.
01:37:07:24 Her friends and family are throwing a big party to celebrate.
01:37:11:17
01:37:13:22 They said she was supposed to live until 11.... And she's 20.
01:37:16:04 That's just crazy for me right now.
01:37:18:04
01:37:19:12 She would just fly down the hallway in her wheelchair
01:37:22:10 and everybody would move out of the way,
01:37:24:05 and everybody knew she was coming.
01:37:25:20 Little miss bossy.
01:37:27:19 That's Renee.
01:37:29:25
01:37:35:26 Well at 10 o'clock we start the, um her feed,
01:37:39:21 which was that bottle, and then, um,
01:37:43:14 we give her Radinidine,
01:37:45:03 which protects her stomach.
01:37:46:16 She's on antibiotics right now because she had a
01:37:48:09 chest cold so we also give her Sepsil.
01:37:51:13 Then she gets a flush.
01:37:53:11 Then at eleven, eleven o'clock we start the
01:37:57:16 Ventolin process, and usually I can do this
01:38:01:16 without her waking up through the whole thing.
01:38:05:05 That's the morning routine.
01:38:06:28 And that's until about 12 o'clock,
01:38:09:11 and then at 12 o'clock we get her up,
01:38:11:18 and wash her face, brush her teeth, do her hair.
01:38:15:00 Hey!
01:38:17:00 She's been, I would say, a baby-sitter,
01:38:22:10 a doctor, a nurse,
01:38:25:04 everything for that kid.
01:38:27:07 Then there's, you know you gotta get the batteries ready.
01:38:29:20 You gotta make sure that they're charged.
01:38:31:12 You gotta get her suction machine.
01:38:33:01 You gotta make sure that there's suction,
01:38:34:16 you gotta make sure there's backup trachea.
01:38:36:13 You have a list of things that you have to make sure
01:38:39:09 of before she even walks out the house.....
01:38:41:09 It's a cycle.
01:38:42:13 It's a 24 hour cycle all the time with her.
01:38:44:27 It's stressful on her.
01:38:46:03 It really is.
01:38:48:02 So, what time is it now?
01:38:49:21 Okay, Hustle. We gotta get ready.
01:38:51:11 Can you take your little thingie off please?
01:38:54:01 Some of Renee's closest friends have come over to help her prepare.
01:38:58:22 Ahhh...Usually I have four on a regular basis...Six off and on.
01:39:03:19 So, yeah everybody comes and chills with us,
01:39:07:24 like they say let's go CHILL at mom's house,
01:39:10:14 ...I think it's because I didn't forget how to be a
01:39:13:29 teenager and yes there's rules and regulations.
01:39:16:24 You know they're at that age where they can tell
01:39:18:29 me where to go if they need to.
01:39:20:11 Mom and I went shopping and I picked out the, ah,
01:39:25:05 black shirt and mom picked out the, um, pink undershirt.
01:39:30:04 Black and white focus - pink accents.
01:39:32:20 It's wonderful.
01:39:35:13
01:39:37:12 Do you like?
01:39:39:13 I like the outfit.
01:39:40:17 Cool.
01:39:41:18 Kay guys. I need you to take over.
01:39:43:11 I need her hair done. I need her nice and pretty.
01:39:45:00 I need her makeup on. I need her to look GORGEOUS.
01:39:46:29 So hop to it, put the pizzas down, let's go!
01:39:50:05 No
01:39:51:12 The funny part is, I'm the one that's getting Renee ready
01:39:54:13 ..so none of you can like, sit.
01:39:57:03 All of you guys are just gonna be like sitting here.
01:39:59:18 I don't care who gets Renee ready, just do it.
01:40:04:09 Aiee...Painful.
01:40:06:09 Calm down
01:40:07:21 Party time.
01:40:09:14 I'm ready.
01:40:11:06 §
01:40:18:01
01:40:21:25 I love music and I love dancing
01:40:24:24 and when I used to walk, or when I was able to like,
01:40:28:09 stand without a wheelchair, I used to dance a lot.
01:40:32:03 My mom taught me to dance,
01:40:33:28 and she's a good dancer so.
01:40:35:22 (sings to music)
01:40:40:07 §
01:40:48:16 Plus music can heal.
01:40:50:19 .. it can make you happy, sad,
01:40:52:15 it's a lot of emotion.
01:40:54:20 (sings to music)
01:40:59:01 §
01:41:05:00
01:41:08:04 §
01:41:17:28
01:41:24:27 I'm determined to still keep my body going and dance is a way
01:41:27:21 to help that because when you're dancing you have to move right,
01:41:31:16 so I think that helps me,
01:41:34:20 §
01:41:39:06 (clapping to music)
01:41:45:14 §
01:41:48:26 (clapping to music)
01:41:53:11 §
01:41:58:14
01:42:01:20 §
01:42:07:17
01:42:29:06 This is what we go through every time we have to go out.
01:42:32:20 Yeah but, usually not with this one.
01:42:35:07 Usually it's the other one.
01:42:36:28 It's ridiculous.
01:42:41:01
01:42:42:12 (singing) The joys, the joys.
01:42:46:03 Ah yes, I was wondering,
01:42:48:12 um..., where my taxi is.
01:42:51:07 Is it here?
01:42:52:21 Yeah, it's here.
01:42:54:29 Woo hoo...
01:42:56:11 Holy bright!
01:42:58:21 Wow.
01:43:01:08
01:43:04:29 So be careful.
01:43:07:25 Yeah, I know, I'm not stupid you know.
01:43:12:04 Whoah!
01:43:14:27 (sings) We're off to the party!
01:43:18:15 We're off to the party!
01:43:20:24 After hours of preparation and a long
01:43:23:08 wait for the wheel-chair taxi,
01:43:25:06 Renee is on her way to her birthday party.
01:43:27:22 She is excited to see her friends and family,
01:43:31:14 despite the effort and the delays.
01:43:34:12 They need to make things easier for people in wheelchairs.
01:43:42:21
01:43:43:28 Can't go through there
01:43:45:03 Can't, its too big. Vehicles too high
01:43:49:00 Dude....We can't go underground, so where do we go?
01:43:52:29 I can't solve inaccessibility.
01:43:55:21 I can try.
01:43:57:07 Damn, its cold!
01:43:59:18 I'm sorry, I should have brought your jacket.
01:44:01:02 It's okay, its all gravy
01:44:03:23 You kinda gotta sit there and think someone's worse than you,
01:44:07:12 it's gonna be okay,
01:44:09:01 you'll get through the day... screw them.
01:44:11:11 And just keep walking and just keep going...
01:44:15:08 § It's just the world that we live in §
01:44:19:15 § It's tough this place ain't forgiving §
01:44:23:25 § It's just the world that we live in §
01:44:28:07 § It's tough this place ain't forgiving §
01:44:31:02 § Suck It Up Princess, Suck It Up, Suck It Up §
01:44:33:06 § Suck It Up Princess, Suck It Up, Suck It Up §
01:44:35:16 § Suck It Up §
01:44:38:27 §
01:44:42:15 Kay, hurry up, nobody'll stop us...
01:44:44:20 Oh god.
01:44:45:24 It's a crowd!
01:44:48:00 Happy birthday!
01:44:55:11
01:44:59:04 That's cool
01:45:02:20 Happy birthday.
01:45:04:03 How many times have you said that?
01:45:06:12 Uh, all day... (Rojae giggles)
01:45:09:24 She's stuck in this wheelchair, but she has the greatest aura.
01:45:13:15 like...I just fell in love with her.
01:45:15:02 I just... I think she's the greatest person you'll ever meet.
01:45:17:18 She has the greatest attitude,
01:45:19:06 and when you feel down, ...call her and you'll
01:45:21:08 feel like - ecstatic when you're done talking to
01:45:23:22 her, and I don't know what I would do without her.
01:45:26:11 To tell you the truth, I just...I love her so much.
01:45:29:05 The fact that I've gone through all this,
01:45:33:24 like, stuff in my life,
01:45:35:25 and been through so much, you know, hard times,
01:45:39:13 and good times too, but like, a lot of hard times,
01:45:43:24 and the fact that the doctors said I wouldn't
01:45:47:14 make it past this age and then past a different age,
01:45:51:02 and a lot of like, my cousins and friends were
01:45:54:16 reminding me of that, so I thought about that,
01:45:57:14 the fact that people said that I wouldn't make it,
01:46:01:08 it's like ha, ha, I'm 20, what do you think about that, huh?
01:46:06:21 (group singing) § Happy Birthday §
01:46:11:04
01:46:13:16 For Renee, reaching her 20th birthday
01:46:15:28 is a great achievement.
01:46:17:25 She has faced her life challenges with courage & determination,
01:46:20:27 never wasting time feeling sorry for herself.
01:46:26:05 Everyone can learn a simple lesson from her...
01:46:30:08 when times get tough, "Suck It Up Princess!"
01:46:36:13
01:46:37:13 §
01:46:52:29 (Clapping, Cheering)
01:47:04:25 § I'm only here to have a good time §
01:47:08:22 § I wont let life bring me down §
01:47:12:24 § It's a brand new day and joy surrounds me §
01:47:17:10 § I'll give it my all won't hit the ground §
01:47:21:18 § I can be all I wanna be §
01:47:25:10 § If I dream I'll see §
01:47:27:29 § I will fly I'llreach the sky §
01:47:30:20 § I want you to hold my hand to make you understand §
01:47:34:19 § We'll get through this, together §
01:47:37:05 § I won't let you down §
01:47:39:08 § We can turn make believe into reality §
01:47:43:22 § We'll get through this, together §
01:47:46:15 § I promise you and me §
01:47:49:14 § You're a princess in a castle §
01:47:53:22 § Against the odds, you stand so tall §
01:47:57:22 § Win the battle, you're a fighter §
01:48:02:12 § So take my hand, won't let you fall §
01:48:06:20 § You can be, what you wanna be §
01:48:10:25 § If you dream, you'll will see I'll watch you fly §
01:48:14:18 § You'll reach the sky §
01:48:16:25 §
01:48:23:11