65_RedRoses: The Story of a Brave Young Warrior

By: Lynn Barker

Canadian Eva Markvoort lost her life to the ravages of cystic fibrosis at the age of 25 but not before she started a revolution to get more of us on the organ transplant lists. On May 3^rd, OWN, the Oprah Winfrey Network, will air the award-winning documentary that tells Eva’s story.

Did you ever need to reach out and make friends on the internet? Did some of these people become your best buds? This was the case for Eva (pronounced Ava), a 23-year-old theater arts student in British Columbia who contacted two other young women, Americans Meg and Kina, who also suffer from cystic fibrosis, a deadly genetic disease that destroys lungs and the digestive system. Together, their online bond made them stronger and got them through the mutual suffering that only they could truly understand.

Phil Lyall, a young filmmaker and university friend of Eva’s, chose to document her struggle and long wait for a double lung transplant, her forming of online friendships and the two years in which she took back her life. Spunky, funny, beautiful and smart, Eva’s story is a testament to her undying spirit.

We got on the cell with Phil to learn more about Eva, her struggle, what happened to the two girls she befriended and what we can all do to honor her.

Kidzworld: How did you first get the idea to do this film? How did you know about Eva’s struggle?

• Phil: She was a friend of mine. I met her at university. I was in theater school with her and we lived in the same student residence. We became fast friends. I didn’t realize she had this fatal illness. At that time she was pretty healthy and vibrant and fun and very popular.
• I decided to change majors to film and went to a different university and when I was graduating, that’s when she fell ill and was in the hospital and was basically waiting for this double lung transplant. I didn’t know those existed. That’s a medical miracle! When she was in public she didn’t want people to know that she’s a sick girl. I never really knew the importance of the whole thing until I visited her in the hospital.

Kidzworld: That must have been a shock to you but you wanted to tell her story.

• Phil: This is such an interesting story; this beautiful girl. You always think of people who are old, and sick and dying but you don’t think that people of her young age (23) needing organs or waiting for a second chance at life, waiting for someone to die in order to live.

Kidzworld: The film was in a lot of film festivals and won awards. How did “65_RedRoses” make its journey to the OWN network?

• Phil: We played the film at a festival in L.A. They wanted to play two documentaries that were “hot docs”. Chuck Braverman was running West Doc festival in L.A. and he found our film and played it and said, “We’ve got to get a way to get this to OWN”. He was able to get it to Roco, a production distribution company in Sausalito, California and they were the people choosing the docs for the Oprah documentary club. Oprah saw the film and said “Oh my God” and that was it.

Kidzworld: This film says a lot about the power of the internet to bond strangers together.  With all the bad press about predators and false identities on the net, was it important to you to show how making friends online can be positive?

• Phil: Yeah, but the online community she was in really didn’t have any predators. It was (young people) struggling with a disease and she was in a forum where there were girls and boys dealing with transplants or cystic fibrosis so it was definitely a safe environment for people who maybe can’t talk to their family and friends about something they don’t understand.
• For her to go online was a natural thing. She could talk to people like her and, at the same time, while she was waiting for a transplant, she wasn’t allowed to be with other cystic fibrosis patients because of the threat of spreading infection.

 

Kidzworld: So she didn’t have anyone else with the disease she could get to know in person?

• Phil: There was this isolation so the idea that they had the internet to talk about it was great. Some of her closest internet friends happened to be in the states hundreds or thousands of kilometers away. It was a beautiful thing for her.

Kidzworld: What was the thing that impressed you most about Eva?

• Phil: I think it sounds cheesy but it was her zest for life. She was always living life to the fullest because, obviously, she knew she wasn’t going to live a full life so she looked at life a different way. “I’m going to live every day like it’s my last”. That’s what she did. She understood that the happiness in life is connections and love and the people you surround yourself with and that’s what really matters. 

Kidzworld:  What was the most difficult scene to shoot, either physically or emotionally for you?

• Phil: I think it was when her pager went off (to indicate that they had a transplant match for her) because I was physically filming that scene myself. We couldn’t get our cinematographer that day and my co-director was holding the boom mic. We filmed it from her pager going off and her going “Oh my God. These lungs are coming” then going straight into the hospital for 24 hours. We felt like we were in an episode of “E.R.” or something, it was so adrenalin-pumping. It was intense.

Kidzworld: What was your biggest challenge overall as a director on the film?

• Phil: It was the cutting, the editing. It was interweaving the other girls’ stories, trying to make sense of it. It’s Eva’s story and her journey through transplant but we wanted to feel that the girls (she had befriended on the internet) were there throughout and how do we cut them in to comment on what is going on? They were waiting on computer to have her write a message when she woke up from surgery. It was hard to integrate these three girls’ storylines to interconnect and make impact.
  

Kidzworld: I think kids and teens will want to know what happened to Eva’s two friends after the documentary was finished. Can you update us?

• Phil: Meg was great. You could do your documentary just on her. She’s rough around the edges. She was having problems but did go back to stay with her adoptive mom and she’s gotten a lot better, is back with her family and is not addicted to her prescription drugs like she was before. She’s back on the straight and narrow.
• And Kina is doing quite well. When Eva got better, it was a beacon of hope for them to see her doing well. Kina is fine too. She was having chronic rejection to her transplanted lungs but her lung capacity got better. She keeps on top of her rejection meds. She’s enjoying life.

Kidzworld: That’s great!  What message do you want to give to kids and teens who are struggling with cystic fibrosis?

• Phil: I think, the first thing that comes to their mind, is “Why me? Why do I have to have this? Every other kid can go out and bike or play without a care in the world but I have to go in for check-ups and take all these drugs. I hate my life.” But Eva pushed through that. It is horrible to have it but it gives you a greater sense of focus in life. Now you have the capability to take life by the horns and live it to a higher degree.
• Oprah likes this documentary because Eva rose above the problems that were around her. A lot of kids and teens will never understand that because we aren’t faced with these big life or death problems. Eva would say “I wouldn’t be who I was if I didn’t have the disease”. It focused her on what was important in life. She grew up fast. She had to.

Kidzworld: And what can all kids and teens to do honor Eva?

• Phil: Definitely go to our 65_RedRoses Facebook page and like it and go to the site and I think spread the message of organ donation. That’s what it comes down to. There are so many people that pass away that have perfectly healthy organs that go to waste. Even if it’s a religious thing or a family thing, if you look to the core of what organ donation is, you pass but you can give the gift of life to a girl or boy and live on in someone else; someone at any age waiting for a lung or a heart. It’s the best gift you could ever give.
• Just spread that idea. “Live life and pass it on”. Go to our site to see what it’s about. Sign up and plan to do this so your family doesn’t have to deal with the issue if you pass on. Let your wishes on donation be known.

May is organ donor month so go to our site 65redroses.com and it will connect you with other sites.