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.
