About Me!

I’m just a Mama, trying to figure it all out.  My son suffers from Emery-Dreifuss Muscular Dystrophy.  He is now almost four years old – all of this started for him around nine months old.  I’m learning to be his advocate as we navigate these waters together, and I hope my stories help others in some way (even though I blog mostly as a form of therapy).  When he was first diagnosed, I searched and searched for information, and there was so little out there.  I searched for support from others in a similar situation, and couldn’t find any.  So I began talking and writing, and then eventually I ended up here, shouting from the rooftops that muscular diseases need their time in the spotlight.  We must find cures, and we must find treatments!!  So here is my soapbox.

Beyond being a Mama to a handsome little man, I am other things.  I am a nurse, and an EMT.  I am a runner who loves half marathons, and has done one marathon.  I am turning in to an exercise junkie, but I mostly do it to offset the delicious foods I insist on enjoying (ie good bread and champagne and pretzels and cookies).  I also use it to offset the stress I take on as part of daily life.  I am a long time horse back riding instructor.  I love the beach and anything with saltwater and sand.  I am a tomboy at heart but I love when other people help me feel beautiful.  I have an amazing husband, family, and huge circle of friends who support me and laugh through it all.  Enjoy my words and my handsome man!!


4 thoughts on “About Me!

  1. What a beautiful story. Harry’s Mama, you are inspiring. I applaud moms like you who have such strength and live each day with abundant, endless love for their babies. Harry is so lucky to have a thoughtful mom like you. I’m happy I found your blog and I look forward to reading more!!

  2. Interesting blog, i have Duhennes Muscular Dystrophy and I’m 24. I recently started blogging sometimes I talk about living with MD. My parents when i was diagnosed were scared and they were searching for any possible treatment as well and there wasnt much. Great time to have md now though some promising meds coming up the pike. Feel free to ask me anything about living with md, i have a differént form than your son but i could still help you if you want to know anything specific.

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