We were supposed to go to Philly for Brayden to participate in a clinical trial. There is a doctor that is using MRI's to monitor the progression of Duchenne Muscular Dystrophy. We contacted them months ago and set up this time for our family to travel to Philly. In return, we are to get up to $1000 in travel expenses, including mileage, hotel and food. We thought it would help the DMD community, wouldn't hurt Brayden and it would be a nice trip to Philly!
Today was the day we were to leave. Brayden had appointments set for 8am Wednesday and Thursday mornings. My mom and niece were all set to travel. Todd had half a day at work and we were going to leave so we could have time to settle tonight before Brayden's first appointment tomorrow morning! The boys were eXcItEd!
The minute Todd got home, we found out they canceled the appointments. The only thing we were told was that one of the MRI machines was down so they canceled all research appointments. Todd tried to plead with her that we were all set to go and she said there was no way we could keep the appointments. No appointments = No reimbursement. This wouldn't be a bad thing except for the fact that we have some very excited kids AND we have tickets to the Eagles Preseason game this Thursday.
Needless to say, we are very disappointed that they canceled the appointment. We are unsure at this time if we will even reschedule with them because they waited so long and wouldn't find a way to squeeze us in. If we were traveling by air, we most likely would have at least bought our ticket, let alone have already arrived in Philly and then we would have been out that money. On top of the fact that this is all happening, we didn't even receive the call from the woman who we have been talking with all along and she hasn't returned our phone calls either.
So tomorrow morning we head down to Philly, just for fun. Afterall, who wants to let Eagles tickets go to waste! :0)
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