I ran into a gentleman over the 4th and we presumed to talk about Trey's diagnosis, and he asked me a simple question that I don't know the answer to..."What are the medical charges associated to…Continue
We are starting Trey out on Steroids today. He needs to be at 15mg a day. Doctor special ordered us 5mg tablets... Does anyone know if there are any contraindications to spreading out the tabs…Continue
Can anyone tell me if they have had any luck getting military to pay for Deflazacort? Trey (now 5.5) is starting on steriods on Friday and the doc said she wouldn't have a problem with Deflazacort…Continue
Things are a bit...well chaotic around here right now... HOWEVER, we have a school doing a fundraiser for DMD research. We are doing an assembly for the children (k-12) explaining DMD, BUT they are…Continue
I don't know if any of you have heard of this but I thought I would pass on... CureDuchenne (website: cureduchenne.org) is having an annual 2010 Climb to Cure Duchenne, Pick your Peak on June 19th and 20th.
I know that many of you will not be able to participate due to various reasons. And I know many of you may be particularily fond of just supporting PPMD, however our money all goes to the same place, right? To cure…Continue
So I don't know where to post this, so I am hoping if I post it here many people will see it...
Okay so our son Trey has a deletion of Exon 52 which we found out about while I was pregnant with our daughter. After having our daughter I was genetically tested and found to not be a carrier, but the genetisist did say that there is a small possibilty of Genetic Mosaicism.
Now 4 months after having our Daughter I get a call from my OB doctor stating that she is…Continue