Welcome to the Start of a Beautiful Friendship

ABOUT SCOTT....
Scott is a 26-year-old male suffering from advanced stages of Duchenne Muscular Dystrophy. Scott is virtually unable to move any part of his body on his own and is completely unable to care for himself.  Unfortunately, his lack of movement has transitioned his body into a very fragile skeletal frame. This is the inspiration of this cause.

Because Scott's body has become so brittle, transportation has become a huge problem.  The full-size, lift-equipped van he has been using most of his life has become unbearable for him for three basic reasons.

1. The van is full-sized and older, so it has a bumpy ride, which puts him in danger of back injuries.
2. The headroom is insufficient, which makes means he has to ride in a reclined position - again putting him in danger of back injury - not to mention that staring at the roof of the van isn't all that entertaining.
3. He is positioned behind the driver.  This is a big problem because his voice can no longer project enough to communicate with the driver, so he can't be heard when he speaks. If he was able to ride "shotgun", he would be able to interact. And, since he would be reclined, the driver cannot see his facial expressions, which is yet another safety issue.

We often joke that it would be great to drive him into the back of a pickup truck so he can see where he is going, and nobody can hear him anyway so at least we will be able to see his face from side-view mirrors.

Seriously, the fact remains that his current van can no longer accommodate his transportation needs, neither safely or realistically. So, now he only gets to leave his home on the rare occasions when transportation can be arranged by renting an appropriate vehicle or when his home health care agency can provide transportation to medical appointments.  Less than a dozen times a year.

Since he is home-bound, Scott is bored, trapped, and almost completely disconnected and isolated from human interaction. He lives in a modest home, not the worst, but a prison to him nonetheless.  Imagine your only social outlet is through social media. - THIS is Scott's reality.

ABOUT OUR CAUSE…

All it would take to immediately and drastically improve Scott’s quality of life would be proper transportation.  As his parents, we are more than willing to do whatever it takes to give all our sons, especially Scott, the world if we could, especially since we suddenly lost our first to the same illness in 1998. We can't go back and ponder regrets.

Financially, options to try to purchase a van for him are such that we just can't make it happen without making unrealistic budgetary concessions. 

We are sad, frustrated, and feeling like we are letting Scott down. It is heart wrenching to see him go from one day to the next with only his computer for a companion.  Although a few folks have offered to spend time at home with him, Scott rejects such offers because both his attitude and the burden of feeling like he has to 'entertain' visitors are too taxing on him. He needs to get out of the house.

The intent of this is to raise awareness to a truth that most of us can't begin to relate to.   Scott, and others like him, can't achieve simple movements like flick a mosquito off his skin, wipe his own nose, or scratch an itch.  That is the truth.  So, the very least that can be done is to hold this fundraiser, and others if necessary, to try to bring his world out of the house and try to let him feel like he has some sense of freedom and social interaction.

 

And BEYOND…

If this project works, the next step is to make 'ScottNeedsAVan' a permanent Foundation for those in similar situations.   

Transportation is taken for granted by many.  The quality of transportation has to be of utmost consideration for people as brittle as our Scott, and awareness on this issue is rare and overdue.