Jamila: My lymphedema started
when I was 18 years old. At its heaviest it got to be 150 pounds. I was bedridden for three and a half years. I would love to walk without the Walker. First baby steps, baby steps. Yeah. Going outside and walking outside. Carmen: Yeah. How do you feel about that? Jamila: Nervous but excited. It’s so beautiful outside, always looking out the window. That was my view for about four years almost. After a while,
it doesn’t seem real anymore. It’s almost like watching a TV show. I was bedridden 24/7 No breaks, no bathroom, no kitchen. No nothing for almost four years of my life. I have lymphedema, distichiasis syndrome of the FoxC2 mutation. It causes me to swell in certain parts of my body not everywhere but just certain parts. The main point where it started swelling was my right leg. Being stuck in bed for so long day after day has its challenges. It can be really hard. It can also be whatever you make it. I had a policy of celebrating every little thing I possibly could. One thing that I learned from my mom, my mind isn’t broken. So even when my body was broken my mind could still be free, I could still learn things like I learned how to do the ukulele. I started coloring. I started doing bed yoga,
because at that time, I was using a bedpan. And my mom who was physically handicapped would have to help me with my bed pan. It was such a struggle for her. I didn’t want her to struggle anymore. So I practiced these stretches so that I can get the range of
motion to do those things by myself. My mom was one of the most wonderful human beings you could ever encounter. She was my best friend in the whole world. Whether it was over video chat, or she was just rubbing my leg up into the wee hours of the
morning because I was hurting. She was with me. My situation got life threatening. Well, my skin started peeling off, and I had such a severe
bacterial infection. They said if I would have waited
any much longer I would have died. That’s a scary thing, almost dying. The surgery was about 12 hours long. It was one of the biggest
that the doctor had done at the time. It is a de-bulking surgery it’s when they take off all the extra tissue and drain the fluid and stuff off the leg and then they do skin
grafts and replace the skin onto the leg and then the leg won’t be able to do much swelling ever again. Unfortunately, a month and eight days after my surgery, I lost my mom. She was my best friend and my caregiver. But most of anything she was my mom. And that was by far the hardest thing. I told you, I told you we
needed an extra pair of gloves we’re doing great. So much work almost got it almost got it almost free. The huge mass that was my life they took skin from that part of my leg and used it to coat this most of the skin graft didn’t take.
So it’s not a pretty girl but it’s mine. And you know,
I didn’t have to get my leg cut off or anything like that. Jasmine: Yeah, but like look at how
far it’s come from where it was before. Jamila: Yeah, like oh this was so bad. Jasmine: This is actually
better than what it was which is crazy to think about. Jamila: When they did
the surgery they cut off 120 pounds of leg including fluid and I just say that
they cut off the skinny girl. Jasmine: Good job. No, oh gosh don’t do that. Jamila: I wasn’t going to fall. My life since the surgery has been a lot of learning curves. I had to relearn how to walk. I had to relearn how to use the toilet. Oh, I’m potty training, but it’s been exciting.
It’s been an adventure. Should I dance? I think I should dance. Jasmine: Go.
Jamila: She said go Lee. What is he doing? Jasmine: He’s coming. Carmen: Hey, Mila. Jamila: In here. Carmen: I work for an ambulance company.
We were sent to the hospital to pick up somebody to be
transported from the hospital to be transported back home. Jamila: By the time I had
met Carmen the first time I had not been outside in about a year, except for riding down to the ambulance. Carmen opened the doors to her ambulance truck and just
let me feel the sunshine. Which is something that almost made me cry because I hadn’t felt it in about a year. Going outside and walking outside on uneven turf. Carmen: Yeah, how do you feel about that? Jamila: Nervous but excited.
I’m willing to embrace it and start having adventures because I’ve been in bed for way too long. Carmen: And just getting out
of the bed is the first step. But the fact that you can now stand because
you basically you now have two legs. Jamila: Sure do.
Carmen: You know, and… Jamila: Like actual legs.
Carmen: Actual legs. Lee: What’s up, Mila?
Lee: Hey Lee. Lee: Ready for the exercises? Jamila: Yes. Lee: So start off on your count. On one, two. Carmen: She really amazed me
about how strong she is inside. No matter how much pain she’s in. I have just been so
impressed how she can just tough it out.
Jamila: 19. Lee: One more Come on.
Jamila: 20. Lee: Good job.
Jamila: Give me some. Carmen: She has lived in a
bed for almost four years. She’s just learning just like a
little kid start to walk again or somebody you know going
outside for the first time is this what it’s going to be to her.
It’s all new. Jamila: Made it. Jasmine can you wait to get over please? I would love to just
walk through the grocery store without getting
tired or needing a walker. I would like to go on a date. You know, something simple like that. Jasmine: Proud of you. Jamila: Here we go. I’m getting it. Yeah. I have a future with
an even bigger purpose. And what you’re looking at now is the start of that even bigger purpose. Jasmine: Yes girl.
Jamila: Oh gosh I would like to, can’t stand it. Jasmine: Girl. Jamila: It just felt right. Lee: Awesome.
Carmen: Oh my God. Jamila: That was my first, first group of long
steps without the walker Carmen: It’s amazing. Jamila: Oh my gosh thank you God, thank you God.
Lee: You did it. Jamila: I love our little family.
Come on Lee. Lee: I’m right behind you
Jamila: Yeah. Carmen: I love it.