Having always been an optimistic person, I guess there are perks to everything. My family would never have experienced meeting and helping Mary Stuart Masterson with her film, The Cake Eaters if it hadn't been for living with the disease Friedreich's Ataxia. The communication with Mary Stuart happened quickly and, at first, I did not realize who I was speaking to even though I know many of her staring movies like Fried Green Tomatoes and my favorite Benny and Joon . You don't expect a movie star to contact you directly. After a few emails, we were off to New York to meet Mary Stuart, actor Jeremy Davidson, her brother Peter Masterson and Jesse Scolaro for interviews to assist the cast and crew with their research for Friedreich's Ataxia (FA).
Living with Friedreich's Ataxia, my daughters Sam and Alex Bode take on each day of their lives with unbelievable courage and many challenges. They overcome things that we too often take for granted. I don't mean just walking, I mean simply trying to maneuver a glass of water to their mouth, trying to reach for a fork or trying to get enough breath for a whole sentence. And doing these intricate daily tasks take up all of their energy. You can only imagine how empowering it was for my girls to work on a movie project like this. And as a mother, how rewarding it was for me to see them contribute to something and feel great about it. It also helps that Mary Stuart Masterson turned out to be one of the most kind and compassionate people we have been graced to meet! Her insight and patience was so genuine! We had a blast spending time with them while they interviewed us and asked some pretty personal questions.
We also spent time on the set during filming where we were introduced to Aaron Stanford and Kristen Stewart. They were just as kind as Mary Stuart. The fact that all these amazing people came together (a cast stitched together by Mary Stuart) seemed like a warm blanket over our family as this movie came together. It was a little over a year that we were all involved thus the excitement mounted for us as the premiere drew near.
Watching my daughters being involved with this movie was extremely emotional for me. There are many life experiences that this disease has stripped away from the girls and any involvement at all is just icing on the cake. To see how their participation and input contributed to the movie was overwhelming! Mary Stuart invited us to participate in Q&A sessions after the screenings to share the reality of the disease with the audience. We were also lucky enough to meet the Jayce Bartok, who wrote and starred in the movie. His vision in writing a character who has FA is incredibly inspiring.
Sam and Alex reveled in seeing how accurate Kristen Stewart (Georgia) was in portraying the symptoms of the disease. They were touched to see that Aaron Stanford play such a kind and compassionate man and how wonderfully he responded to Kristen's character. As a mom who wants as normal a life as possible for her daughters, I had such a sense of relief seeing someone like Aaron's character on screen! He brought so much emotion to the part. Mary Stuart took an extremely devastating disease and showed the world a sensitive and realistic look at coping and living with it, and, for that, I am forever grateful! I will always remember this experience
as one of enjoyment, enlightenment and special opportunity for us all.
As a member of a National Organization called Friedreich's Ataxia Research Alliance (FARA), I am grateful that this movie can help call attention to this disease. Friedreich's Ataxia is a rare, genetic neurodegenerative disease that is recessive, which means that most people don't know they carry the gene- and 1 in 100 people are carriers. The disease is progressive and there is no treatment or cure today. Symptoms like severe scoliosis, heart trouble, balance problems, diabetes, speech, vision, hearing difficulty, and more, typically begin appearing between the ages of 5 and 15. FARA is an organization driving research worldwide to slow, stop and eventually reverse the symptoms of FA. We are on the edge of breakthroughs.
With this disease, you have a small window to see your child grow up perfectly healthy then boom! it all starts to fall apart. Worse yet, you try to teach your child to cope with the devastation at such a young age when coping skills haven't even been developed. It is a tragedy yes, but with the continued work of FARA and people like Mary Stuart Masterson and her wonderful cast and crew, there is hope. We continue to forge ahead and bring knowledge, awareness and funding out to the world. Together we will conquer this disease and when we do, Mary Stuart Masterson will be at the top of my list as someone who played an integral part.
From left, Sam, Mary and Alex.