As you may know we’ve waited almost a year to see a highly recommended and sought after doctor in the Muscular Dystrophy community. She’s established a well known Neuromuscular/ Duchenne Muscular Dystrophy Clinic in Worcester, M.A. and leads research in DMD right here at UMASS. It seemed like just yesterday when I contacted Dr. Wong … More **Jonathan News 2**
If you’ve ever met my boys and been around them at some point you’ll know they have this preliminary shyness, and then they slowly but surely let loose (farts and all) their wild side. It was common to hear mild Raptor noises to colossal Godzilla roaring for no apparent reason. I used to avoid public … More Where the Wild Things Are
God really had to push me on this one. “I think the Holy Spirit is telling you to move them.” This isn’t the typical Back to school gush post, in fact its more like I’m gushing that God has done it again! He’s helped us over another hurdle. Every year I’m in prayer during the … More Do-OVer for the First Week of School!
If I’m going to be completely transparent with our journey, I need to share about the darker parts along with the positives. I won’t dabble in it for too long since it is so easy to post-up camp in the dark. An event that I’ll be sharing about here sent red flags all over the … More The Dark Side: Jonathan
I’m happy to share some big news with you wonderful supporters first. It has been confirmed that Jonathan has been accepted in to the Duchenne Program in Boston at UMASS (University of Massachusetts Medical) where one of the leading Doctors in Muscular Dystrophy research will be overseeing Jonathan’s plan of care. The passed several months … More **Jonathan News**
Flying solo on parenting… let’s be honest here, our story would not be as unique or rare if I were parenting Joshua and Jonathan while spearheading DMD as a married woman. Through being involved with many Muscular dystrophy groups and the community in general, I realized that the scope of the single parent demographic is … More Flying Solo
A Giggle from our hut … It’s exactely as it sounds like. “Silent but deadly,” To quietly break wind, cut the cheese, step on a frog, pass wind, let it rip, create fart air. If there’s anything that these boys find hilarious it’s gaseous jokes. I don’t think the boys go a day without cutting … More Silent But Deadly
DMD (Duchenne Muscular Dystrophy) “is a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact” (MDA). Commonality: Rare. Fewer than 200,000 U.S. cases per year. Duration: Long term diagnosis. Life long disease. Cure: None….yet. Affects: anything involving muscles. Also lungs, … More Quick look, DMD?
I was a young married mom when I had Jonathan. I had no idea what to expect or what to do as a wife or as a mother; it was all a new experience for me. I had barely touched the “What to expect books” let alone a Good housekeeping mag, but what I knew … More Tell-tale signs
So, you’re here! And it’s not by accident that you are. You found interest and care about our crazy little journey because we’re friends, or your family and want to stay up-to-date. Or, maybe you scrolled and searched for some answers about being a newly single parent or your child was recently diagnosed with Muscular … More Cmon in, your presence is not by accident!
The Giggle Hut Blog 