Pbmom's Blog

May is Cystic Fibrosis Awareness Month. According to the Cystic Fibrosis Foundation website, cystic fibrosis is an inherited disease that affects the lungs and digestive system in about 30,000 children and adults in the United States and 70,000 worldwide. In the 1950’s, children rarely lived long enough to attend elementary school. With research and medical treatments, outcomes are much better, yet still a cure needs to be found.

Kickstarter is a website that was developed to fund creative projects. According to their website, since 2009, more than 4 million people have pledged over $611 million funding more than 41,000 creative projects. Each project details what its needs to continue in development. Only projects that reach their goal 100% within a set time will be funded by those people who back the project. Oftentimes developers will offer incentives for certain levels of pledges. People often pledge because they feel some emotional connection to a project.

I was personally moved by the intense commitment of an actor who is associated with a project, Wesam Keesh. He was from the show “TOUCH” that was recently cancelled by Fox Broadcasting. The show opened with a narrative from Jake Bohm (actor David Mazouz) about numbers very similar to the a belief borne from the red string of fate, a Chinese legend that said the gods tie an invisible red string around the ankles of those that are destined to be soul mates and will one day marry each other. The two people connected by the red thread are destined lovers, regardless of time, place, or circumstances. This magical cord may stretch or tangle, but never break, a concept very similar to soul mates. But Tim Kring, the creator of TOUCH, twisted this idea even further to tie a group of individuals’ lives together.

This project on Kickstarter is a film called HYPERION. Hyperion in Greek mythology means “the high one.” Hyperion was one of the 12 Titans. He was the Lord of Light. It is also the name of the tallest Redwood tree. 

HYPERION is a story created by Boman Modine who was inspired by the life of Eva Markvoort who passed away April 27, 2010 of cystic fibrosis. Her life journey can be read on her LiveJournal at http://65redroses.livejournal.com/

Being a mother of a child with severe autism and other disabilities, I understand the pain of seeing your child suffer with an incurable disease. Someday I hope a cure is found for autism, and if not that, then how it can be 100% prevented. I know that awareness is only the first step. I prefer having “action” than awareness. If this is the story inspires people to want to give to the Cystic Fibrosis Foundation, then this is a story that needs to be funded. I understand why this movie is called HYPERION. She was a goddess of light in the face of this disease process, in the face of her very palpable mortality. While researching this article, I discovered very few films were ever made that involves stories of the lives of people living with cystic fibrosis. There have been occasional episodes that have involved cystic fibrosis. Not having seen any of those episodes, if it is anything like autism, they likely get it mostly wrong. I felt like HYPERION might be like the movie 50/50. No one understood how this movie could work, but it did. I understand that in that movie, the character had a positive outcome, but we all face mortality and how we live in the droplets of life between birth and death is what matters.

Wesam was kind enough to answer some questions about the project and why this project is special to him.

How did you get involved in this project?

Boman Modine (director/writer) and I first discussed the project in its early stages during a regular coffee meet up. The story touched me deeply and the awareness it brings to Cystic Fibrosis is extremely valuable. You get to see how the disease affects people who have it, loved ones involved, and third party individuals. The message it tells is one of hope, love and strength.

Do you know someone who has (or had) cystic fibrosis?

Before this film I did not know anyone with Cystic Fibrosis, but through the film making process I was so honored to meet a woman who had a lung transplant from CF. Her story is amazing. She had her lung transplant 16-1/2 years ago and is doing great right now. Her attitude through most of her life has been a positive one and I do believe her positivity and inner faith pulled her through dark times in her life. Her case, unfortunately, is a very rare one. Transplant patients tend to survive only a few years after the surgery. She also mentioned to me that many young CF patients she has met have had a very negative and pessimistic attitude towards their ordeal. She really wants to let them know that their lives don’t have to be ruined by this disease. Yes, it’s an aspect of their life but it shouldn’t dictate their attitude or achievements that they could accomplish.

In researching how many films there were about cystic fibrosis, there have been a rare few. There have been individual episodes of different television series. What is special about this movie?

What makes HYPERION stand out is the positivity it brings through its story, the realistic relationships that are affected, and the humanity of the human spirit in the most dismal of times.

I see that Eva Markvoort, the woman who inspired this movie, HYPERION, passed away in 2010. Did you get to meet her before her death or her family at all before filming?

I did not unfortunately. It would have been a great honor.

What did you need to do to prepare for your role in this movie?

As of now, I am still in the process of preparation. Lots of reading and talking with people affected by CF.

Kickstarter can be a blessing for a lot of projects that would not otherwise get made. I see you passionately tweeting about this project, trying to get investors. What is driving this passion?

The message. There are many diseases out there that need research and awareness. Cystic Fibrosis is unfortunately one of those diseases that get overshadowed. I’m a very active person and I couldn’t imagine being stuck in a hospital bed. It would be so incredibly frustrating and depressing for me. I’m thankful for the body I have. So, I want to help those who don’t have what I have. I want to give them strength. We need to show people that even the smallest amount of thanks, donation, or sharing goes a very long way. The smallest effort could have the biggest effect.

From Right: Jason White, Joe Toronto, Wesam Keesh, Eddie Hassell (Courtesy of Wesam Keesh)

————————–

The project is struggling. With only 16 days to go, it is only about 33% funded. You do not have to be wealthy in order to be a part of something beautiful. If 3000 people pledged $5.00 each, that would get them there. I easily have 3000 views of my blog. I decided to join the cause. Because in the end, we are all connected.

For more information, please check out the project at: http://www.kickstarter.com/projects/447490465/hyperion-0?play=1&ref=search

Follow these people associated with the project on Twitter:

Boman Modine: @bomanmodine
Joe Toronto: @joetoronto10
Wesam Keesh: @WesamKeesh