August - SMA Awareness Month. Needless to say, the end of August doesn’t signal the end of awareness for those affected by it, but it’s the end of the ‘official’ month of awareness, and that calls for a very special post. I’d planned to whip up all kinds of neat facts about MJ Purk and Brenda Hanson, her super-duper caretaker/partner in crime for over 20 years, but MJ’s aunt, Jill, beat me to it. Consequently, I’m letting her speak for her truly awesome niece, who is able to be truly awesome in large part because of Brenda. They are an incredible pair and most definitely blessings to all who know them, inside the SMA family or not. And now, here’s Jill.... * * * Today is the last day of August and the last day of SMA awareness month. Today we honor all of the warriors that fight the fight every single day and the angels whose strength helped all of us through many difficult days….. My niece, Margaret Jo Purk has SMA Type 1. Life expectancy was 6 months to 4 years of age. She is 25 years old and the oldest person with her type of SMA that we are aware of…..according to her doctors. (Margaret’s mother was killed in an automobile accident when Marg was 3 (1991) and her sister Emma died from SMA the following year (1992). She and her caregiver, Brenda ~ who by the way IS Super Woman and never leaves Margaret’s side, spend countless hours making and shipping off blankets to newly diagnosed children around the world. You can visit their website to learn more… our-sma-angels/b4sma/ In addition to sending out “Blanket Hugs” Margaret reaches out to the SMA community by making beautiful awareness videos, memorial videos and merchandise to help raise awareness. She is truly one of the most inspirational women I know! On the rare occasion that she allows her struggles to be seen and the tears flow down the side of her cheeks, I consider it an honor to be at her side comforting her. Be assured it is an honor because it is not often that she allows herself that freedom of emotional release. (a trait that for some reason, we “Purk” women view as a sign of weakness, but only in ourselves…..not in others) Margaret has been given the title “MJ ~ the SMA Queen” by the people in the SMA community. Her willingness to share so much of herself started when Tim, Beth Marg and Emma were used in a study that led to the discovery of the gene marker to help identify SMA on the DNA strand. She has been a patient of several doctors and also a world of knowledge for people going to college in the various fields of the health profession. While attending college at Wright State, Marg’s health started to decline. She started as a patient at Dayton’s Children’s Hospital and now is a ‘regular’ at Nationwide Children’s Hospital in Columbus, Ohio. She has a neuromuscular doctor named Dr. Kissel who in the director of Neuromuscular Medicine at OSU Medical Center. He marvels at her willingness to help train anyone brave enough to cross her path. She will not hesitate to answer questions regarding her health openly, honestly and completely. Dr. Kissel also loves her little sick and twisted sense of humor (another ‘Purk’ trait I fear)…. For more info about Dr. Kissel ~ neurology.osu.edu/neuromuscular/kissel.html Today, my Queeny, I honor you and raise awareness to your daily battles and your great work in the SMA world! You are my HERO!!!! — with Brenda Bforsma Hanson and MJ Queen-Purk.
Posted on: Sat, 31 Aug 2013 15:07:59 +0000
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