We have two wonderful young boys, Gavin age 11, and Logan age 9. Back in late 2005, both of our boys were diagnosed with Duchenne Muscular Dystrophy. Duchenne is a severe form of MD that primarily affects young boys. It is a muscle-wasting disease that robs young boys of their ability to walk and eventually affects the heart and lungs which ultimately is the cause of death at an average age of 18-22 years old.
About a year and a half ago, our oldest son Gavin began using a scooter to help him with his mobility. At first, he spent probably 20-50% of his time in the scooter. But now, he is using the scooter for 70-80% of his mobility. As the scooter has been an amazing life saver to this point, it is starting to play a negative role on his posture, and the scooter itself has its limitations.
So we just took Gavin to NuMotion to get measured for his new powerchair. I have never seen Gavin light up so bright as when he was discovering the new world that will open up with this new chair. It is Gavin’s pure joy and anticipation for his chair that is helping my wife and I accept this tough transition. So as we eagerly await the delivery of his new chair, we are facing the next inevitable hurdle……We have to be able to transport this new device around!
The current van that we have is a special accessible van with an “access seat” that helps Gavin get in and out. Once Gavin is loaded up, we then disassemble the scooter and load it in the back of the van, kind of like the game Tetris. This van has worked great for the last two years, but with the new chair coming, we need to look at getting a full conversion to our van. This will ultimately allow us enough space to transport both of my boys and their mobility equipment as well as both my wife and I.
If you have read this far in to this letter, then you must understand or empathize on some level. We greatly appreciate you taking the time to hear our story, as we understand that there are many other stories similar or worse than ours out there. Bottom line…….the complete VMI Northstar conversion is a grand total of $28,850. Again as stated above, this will allow our entire family and all mobility devices to travel together safely. We are exploring every angle of this to help make it possible, but realize that it is a pretty big mountain to climb. We greatly appreciate any help that you can provide, and we also gain strength from all of your prayers. Thanks again!
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