Hero Film Festival & Awards, a film festival and awards program celebrating depictions of heroism in film, is nearing the end of its first cycle. Films selected to be honored during this first edition of the festival will be announced in September. This week, as we continue to spotlight filmmakers who have submitted their work, our own Nicholas Crawford (NC) interviewed filmmaker Kyle Anne Grendys (KG) of Fraser Syndrome & Me.
Introducing Fraser Syndrome & Me
Kyle Anne Grendys
Grendys is a twenty-six-year-old filmmaker from Chicago who recently graduated from the University of Wisconsin-Milwaukee. She is an amateur musician, a musical theater fan and a dog mom. Kyle Anne is only the seventy-fifth person to be born with the rare recessive gene disorder called Fraser Syndrome. Having always felt alone in the world, she sets out on a journey to find her community and finally meets others just like her.
NC: For those yet to see your film, can you explain your condition and the challenges you often face because of it?
KG: My parents met, fell in love and had kids, neither of them knowing that individually they both shared the same recessive gene that would lead to me being born with the condition. I was born with one kidney, webbing on my fingers and toes, a partially fused left eye, a small larynx and small ear canals. Furthermore, I am both hearing and vision impaired.
NC: What fueled your desire to make this movie?
KG: Having been told throughout my childhood how rare my condition was, I often felt alone. After reaching out to other doctors and hospitals, my family and I found no leads in our search for others. This documentary has helped me achieve my goal of finding those living with Fraser Syndrome.
If you search for Fraser Syndrome online, you will likely find some of the more daunting facts involved with the disease. What you would not find is that in London there are three amazing ladies living very normal lives. You would not find Maša who lives on a farm in the Czech Republic with her partner and their cute dog. You wouldn’t find Noah in California who reads more than anyone I’ve ever met. However, you will find these individuals in my documentary.
I recently received an email from a mother in Mexico who is currently pregnant with a baby that will soon be born with Fraser Syndrome. She said to me, “Kyle, talking to you and seeing your documentary last night honestly saved me. It is wonderful, so full of hope and resilience, and as a future parent, so desperately needed. Thank you.” All I could say was, “I’m so glad you liked it; I made it for you.” Because I did make it for her and all the families yet to come.
I set out to make the film my parents needed when I was born and I’m so proud to say that I have.
NC: You clearly had the support of your family in making this film; did that take much convincing?
KG: I have always had a tremendous support system of family and friends. This group has always reminded me that I can accomplish anything I put my mind to.
NC: Making an independent film, especially one that requires extensive travel, is never easy. What was the most challenging part for you?
KG: Editing was most definitely the hardest challenge. I felt such an overwhelming pressure to give each story the justice it deserved. Because I made this film for a class, I had to keep the runtime under twenty minutes. I have footage that I would love to use if I’m ever able to make this film into a feature. I spent hours staring at my computer unable to make a cut because everything felt so important.
NC: In the film, you meet several other individuals living with Fraser Syndrome. Describe how it felt to finally meet someone you could relate to on that level.
KG: It felt like coming home. I have an amazing family and wonderful friends but sometimes it’s hard to feel related to them. Like myself, each of the people I met had undergone over twenty surgeries. We have all dealt with being stared at or talked down to because of our appearance. For the first time, I truly felt heard and understood. That’s why it’s so important to me that I fight for Fraser Syndrome awareness, I want everyone with the condition to know that they aren’t alone.
Do you still keep in touch with the new friends you made?
KG: I’ve been lucky enough to keep in contact with all the families from the movie. We all even have our own facebook group. I have also been able to visit Máša in Prague. I dream of all the European families coming to a screening of the film so that they too can share the incredible outpouring of love and support.
You very clearly have a knack for filmmaking. Now that you’ve told your story, do you ever plan on picking up the camera again?
KG: I’ve never put it down. There are home videos of me as a child trying to convince my dad that it was my turn to use the camera. Do you know the figure of speech often used for a good photographer/filmmaker, “They’ve got the eye?” I remember thinking when I was little, “How cool would that be if my one good eye was the eye?”
As for what’s next, I still really want to make Fraser Syndrome & Me into a feature. I am hopeful that it will happen soon.
Why do you feel that this film is a good fit for the Hero Film Festival & Awards?
KG: I like to say that I see the world with a view you could not get with two eyes. I have seen the very worst of this world. But without the bad, I would never recognize the good. Fraser Syndrome has touched some of the most kindhearted, inspiring and strong people I’ve ever had the pleasure of meeting. Families dealing with disabilities, visible or not, are often marginalized. Those who choose to not let their struggles define them should be celebrated for the heroes they are. I am very fortunate to have many heroes in my film, especially the ones who raised me.
For more information on Fraser Syndrome, please visit NORD (National Organization for Rare Disorders.)