My wheelchair weighs over 500 pounds. Due to my severe muscle weakness, it is very difficult for someone to carry me into another vehicle without my wheelchair and I cannot sit comfortably. I’m asking for your help so I can get a reliable wheelchair accessible van.
Born with a form of muscular dystrophy, known as nemaline myopathy, I have never known what it feels like to walk or breathe on my own. At just a year old, I went into respiratory failure and was placed on a ventilator for every breath and have been in a power wheelchair since the age of two.
I never let my disability define me. However, it does effect many aspects of my life. Despite these challenges, I love my life and try to live it to the fullest. I truly believe that struggles are what make life worth living. They make you appreciate the successes and happy times that much more.
My power wheelchair is my source of independence. And with my wheelchair accessible van, there is no stopping me. My van took me on numerous adventures, public school, college, and to obtain my master’s degree. It took me to numerous job interviews, where I was reminded me that employers will judge me for my disability. Even an employment agency that supposedly helps people with disabilities find work stated that I was too "scary" for others to be around in the workplace, so if I really wanted to work, I should do so from home. Using this as motivation, my van took me to volunteer at nonprofit organizations to give back to others and gain experience in my field. Soon, my van took me to my first job and now to my current full-time position.
To add to my many blessings, I met an amazing man during my senior year of college. Together now for 10 years, we said “I do” in October 2014.
We are asking for help because I have had my current van for 7 years and it already has 1150,000 miles on it. Almost every week, another repair needs to be made. It refused to start six times in the last month. As a result of my medical needs, I have to have my nurse or husband next to me to handle my medical needs or any emergency while someone else drives. Therefore, just getting to work is equivalent to two trips – A driver (usually my mom) drops my nurse and I at the office and then returns home. Getting home is another two trips.
Accessible vehicles can only be done with certain brands of vans. It’s not possible to lease a wheelchair accessible vehicle because of the extensive modifications that are needed. A used car, with 60,000 miles, is still three-quarters of the price of a brand new accessible vehicle. We would be spending a little less for a vehicle that would need to be replaced in just a few years. The modifications alone cost at least $25,000… then add the price of the van on top of and the total cost is over $60,000.
My husband and I are looking to advance our lives and hopefully start a family. With your help, we can have a little less pressure of a ridiculously high car payment.
As there is so much going on in the world right now, and challenges going on in the lives of many families, asking for help for a wheelchair accessible van may seem trivial. We certainly don’t want anyone extending themselves for us. Even $1, $5 or $10 would add up to make a huge difference and help with the down payment.
Thank you all for your consideration and generosity. God bless you.
- Suzanne Mascola
- Lisa Pignatello
- Gary & Brigith Olivero
- Ivana Salerno
- The High Family
Organizer and beneficiary
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