Gently I laid my hand across Josiah's chest. Even before I could feel his heart racing I could see beneath his shirt, rapid palpitating. Fear began to invade me as I looked into his deep brown eyes. Josiah knew what was happening, softly he described his symptoms to me while I adjusted his thin body on the bed. Trying to give comfort to both of us, I reminded Josiah of his last visit with his cardiologist and our discussion.…Continue
Lane is 11 and in the 5th grade he has IQ scores from low to extremely low. Number wise he has a few that are right at 70 but others as low as 36. I have fought since 1st grade to get the school to acknowledge how behind he was. But they always insisted all was ok because he was making progress on goals etc. Finally couple years ago was clued in and started working with a state advocate. She pointed out quickly he was meeting goals because they where vague and nothing specific to make them…Continue
Google and social networking enable news – both good and bad – to travel far and wide. Google Alerts have informed us that AVI’s stock has fallen below $1.00 and press releases talked about changes within the company. Amazing that we are all becoming experts on NASDAQ and stock prices!
Families participating in trials and others waiting for next exons and next steps, sit on the sidelines wondering and worrying.
I spoke with Chris Garabedian this morning (so…Continue
Some of the most asked questions we get at PPMD are:
Especially this time of year, our loved ones want to get involved and want to give. We want to make supporting PPMD as easy as possible for you, the person asking your online and offline world, to give and for the donor themselves. So we've come up with a few unique ideas to help you help your friends to make it happen!…
Added by Will Nolan on December 16, 2011 at 9:28am — No Comments
I am new to the site but I waswondering if anyone has an opinion on Duchene boys seeing psychologists?
My little guy is spending more time in bed watching TV and less time doing other activities. He is still ambulatory but he refuses to stretch and do his excersising. He is no longer able to pedal his "Tryker" bike which kept him moving with the crowd of teens on our street. I am afraid he is going to isolate himself.
This is too depressing...
I posted this on Facebook but felt I should share this here also. I have 3 wonderful boys. Tom is 16, Kevin is 13 and Brian is 10. Tom and Kevin have DMD, Brian does not.
I have often wondered what will happen to my boys over the last 12 years since their diagnosis and when Brian came along 10 years ago, my worries for him were different. As he has gotten older and has watched his older brother go into a wheelchair and his other brother use one part time, I wonder what…Continue
This time of year everyone is in holiday mode, or getting into holiday mode, or sick of being in holiday mode. But something else happens this time of year that effects many of us – especially our children. Report cards. The end of the year is when teachers meet with parents to tell them how little Timmy is doing in class. If Timmy is in high school or college, grades…Continue
Added by Pat Furlong on December 13, 2011 at 2:30pm — No Comments
For the holidays, Pat and Ivy have co-blogged about words that are particularly used this time of year. These words are often redefined by our community because our everyday life requires new definitions. But that does not mean that we must be denied any of the joy of the holiday season.
Happiness and Joy
Endocrine issues are deeply personal to every one of us. They represent our masculinity, our femininity. They impact our weight, our height and how we look. As our boys with Duchenne grow and develop into adolescents, they and their parents are faced with these intensely personal and complex issues. The purpose of this meeting was to engage with experts to develop information related to these issues that parents and their sons might use with their physicians to encourage (or insist) upon a…Continue