The film is centered around 6-7 people who have the genetic disorder Marfan Syndrome or a related disorder. One of these people is me, the filmmaker, Liam Nelson. I was diagnosed with Marfan when I was 11. When I was diagnosed I had aspirations of being a professional basketball player as I was 6’ 3” at age 11. This diagnosis meant I had to stop playing any sort of sports all together and a whole bunch of other new restrictions due to Marfan’s effect on the heart, eyes, lungs and joints. I spent a year of my life in a deep depression no 11-12 year old should have to suffer through. Then, I rediscovered my love of filmmaking, but I was still under the impression that filmmaking wasn’t worth pursuing due to the common misconception that the lifespan of someone affected by Marfan was a maximum of 30 years. Then, I was able to attend a conference put on by the Marfan Foundation which changed my life forever. This conference allowed me to meet people who were in their 60s and 70s affected by Marfan and also allowed me to meet people who had done incredible things despite and even because of Marfan. These same people I met at my first conference are the ones showcased in my documentary. I thought for a while that I was the only kid who had gone through that period of hopelessness until last year at a family camp put on by the Marfan conference I met a 10 year old named Ole. He is a talented young artist who had vision trouble due to Marfan for the first 8 years of his life. He never let the fact that he couldn’t see stop him from drawing, but he had fallen into the same hopelessness I had felt when I was a kid, there was no point because he had no time. His mother told me after only a few days spent around me and other folks who were only a bit older than him that the door had opened to his future. That is the primary reason I want to make this film. I want kids like Ole and I all across the country with Marfan and related disorders to see themselves not as a sick person with no future, but as a person who can pursue their passions despite and even because of Marfan. This film is for those kids, but every person should be able to take something away from the film. First of all, if anyone who watched the film loved someone with Marfan or a related disorder it could really help them understand how much Marfs (loving name for folks with Marfan or related disorders) can do. Growing up, every Marf I have met has stories about telling their friends about them having Marfan and immediately being barraged with the questions “Are you going to die?” “Do you need help?”. These questions come from a place of caring, but when your friends begin to treat you differently it can really do a number on your self esteem and make kids feel like they are different, that they are dying. This documentary will hopefully be a tool for kids to show their friends and family who care about them that as long as you know your limits, you can live a totally normal life with Marfan. One of this documentary’s main points is how getting a new lease on life due to Marfan can be the greatest motivator, that is why I have decided to make it now. If I don’t go out and live in this time which has been reopened to me, what is the point of having it? As a 17 year old filmmaker who has had a short in the Cannes film festival and has made world wide distribution connections this is as good of a time as any to spread this message.
Learn More: http://newhavenproductions.com