I have a rare genetic disorder, Morquios’ Syndrome, a form of dwarfism that effects the growth and development of bones and joints.
Over the last couple of years my ability to walk even short distances has decreased drastically as a result of worsening arthritis in my knees, increasingly bad balance and diminished lung capacity. As a result I can no longer load and unload my scooter from the car by myself. I am at the point now that I can no longer walk even the short distance from the back to the front of the car and climbing into the car using a step stool is perilous. Because of this I have had to eliminate my community outreach and volunteer work for New Horizons, (something that I deeply love doing). It is also putting my job in danger. I can’t do all of the essential functions of the job and there are days when I can’t go to work because I have no one to help me.
I have tried other ways to get an accessible van. I entered the NMEDA contest and tried to win one, however, 4 other very deserving people were chosen. I have also applied for assistance from the Florida Division of Vocational Rehabilitation. Currently, they have a waiting list that increases daily. The list has 3 categories, I am in Category 2. At this time only category 1’s are coming off the list and it is unknown when categories 2’s will start coming off the list. If I do come off the list they will help with the modifications to the van but I will have to pay for the van itself and some of the things needed.
This is the part where I ask for your help, (and yes this is difficult for me). For so many years I have helped others but I now need to ask for your help to continue my life’s mission. My goal is to raise enough money to buy a new or used accessible van that will help me gain back my independence.
My goal is to raise $65,000 for a new van.
I know $65,000 seems like a lot, here is the breakdown:
$50,000(approximately) for a van with the basic conversion (lowered floor and side entry ramp)
6-way seat: $3,400
Pedal extenders: will depend on the vehicle
Airbag on/off: $300
Sales Tax (approximately): $ 4500
Approximately $4800 site and payment handling fees
Other taxes and fees: unknown
There are a few other things I may need but exactly what they are and how much they will cost can’t be determined until I actually get a van. These may include a special seat cushion, extended rearview mirror and special side mirror inserts. There could be other things as well. Customizing a van is specific to the individual needs of each driver with a disability and varies greatly.
This is your chance to help! There are a few ways you can, of course donate, that would be awesome. Another great way to help is spread the work: share it on Facebook, twitter and any other social media site you use and encourage your connections to do the same, don’t forget email and word of mouth, the more views and shares we get the better chance I have to accomplish the goal. Last but certainly not least keep me in your thoughts and prayers.
Thanks for reading my story.
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