July 2008 Blog Posts (27)

Heeding the beat of a different drummer.

When I think of families caring for a child with a chronic condition I sometimes think of nineteenth century American writer and poet Henry David Thoreau. He wrote "The mass of men lead lives of quiet desperation." I don't entirely agree with Thoreau, yet realize there are moments in our lives where we struggle for control and insight.



It is a daunting task to live and breathe Duchenne each and every day and those of us connected to this disorder cannot escape it's grasp. Unlike… Continue

Added by Brian Denger on July 6, 2008 at 7:45pm — 3 Comments

The Happy Ending

.....as it ends up, two people bid $200 dollars on Stephanie's scrapbook auction for Micah. So Stephanie decides to make two books, and then another of Stephanie's fan/readers donated $100 of her own money to the pot for a grand total of $500. Again this is someone who does not know ANY of us. What a AWESOME reminder that God is taking care of Micah!

Added by Jenny on July 5, 2008 at 1:00pm — No Comments

My Hero Everyday!!

Jonathan is my hero! Not much stops him, even though he has Duchenne Muscular Dystrophy. He is a good student and has earned enough merit badges in boy scouts to become an Eagle Scout. He is working on his community service project which is the last requirement to obtain the eagle scout rank. He is a member of the order of arrow fraternity in boy scouts. He has a great personality and laughs all the time. He is my inspiration every day. Jonathan told me "Mom, so what, I have Duchenne MD. No big… Continue

Added by Christine Piacentino on July 4, 2008 at 4:32am — 2 Comments

Random Acts of Kindness....

Team HAM, creating HOPE, raising AWARENESS, fundraising for a MIRACLE for DMD is the local Run for Our Son's team that I co-lead with my good friend Heather in Gig Harbor, Washington. Our team goal is to raise $50,000 for PPMD by November. Each fundraising event has brought our team new blessings, starting with our search to find a local 5K route that lead us to find another local family whose son has DMD, who didn't know about PPMD, what an… Continue

Added by Jenny on July 3, 2008 at 10:30pm — No Comments

Re-authorizaton of the MD Care Act.

I just sent this letter to all my Alaska government officials to get them to sign the Care Act today. I feel totally uplifted!! Thanks to PPMD's incredible website. They have made this process incredibly easy. Go to their www.endduchenne.org website and check it out. Look under tab, Speak Up.



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My name is Misty VanderWeele a born and raised Alaskan. I live and work here on the family farm in Palmer. My 16 year old son Luke,… Continue

Added by Misty VanderWeele on July 3, 2008 at 1:17pm — 2 Comments

Cast Free!

Jon is cast free, at least for now. The therapist wanted to recast his right foot to see if she could get a little more stretch out of it, but because he has a pretty decent case of heat rash she decided not to. She did make him promise to wear his AFOs as much as possible so he can keep the range we got. He can get both feet to neutral, pretty good considering we started with a 20 degree foot drop. So now we have to encourage him to stretch and wear his AFOs so we don't go back to where we… Continue

Added by Susan Rathfelder on July 2, 2008 at 9:00pm — No Comments

Lucas attended his first live musical performance

Lucas went to Summerfest down at Milwaukee's lakefront to see Sick Puppies. While hanging out we also saw a band from Chicago - American Taxi.

After the Sick Puppies performed, Lucas, I and his brother were able to "meet" the band and get their autographs. Not many signed bands take the time with their fans like that so it was really cool.

-M-

Added by Servais Family on July 2, 2008 at 2:39pm — No Comments

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