$155 of $25,000
4 donations

This fundraiser ended on 10/06/12

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Taking a donation for myself, because I have a very rare condition and need a conversion van in order to drive and obtain my independence.

Hello. My name is Alisha. I'm 27 years old and from North Carolina. I'd like to take a moment to share my story with you before telling you about the cause of this fundraiser.

I'm disabled and was born with a very rare condition called Escobar Syndrome, also known as Multiple Pterygium Syndrome. The exact estimate isn't for sure, but there's approximately less than 100 people living with the condition worldwide. It entails many symptoms, including: multiple joint contractures throughout the body with skin webs that limit range of motion (under the knees, fingers, underarms, etc.), craniofacial abnormalities (higher arched upper palate in the mouth, possible cleft palate, low set ears, etc.) a webbed neck, low muscle tone and muscle weakness throughout the body, progressive scoliosis, either Pectus Excavatum (sunken in ribs that compress the heart and lungs) or Pectus Carinatum (ribs that go outward and also strain the heart and lungs), severe lung restriction, low lung capacity (I have 34% lung capacity), respiratory distress, rocker bottom feet (bone where the arch should be), and short stature in many cases.

A lot of my childhood was spent in the hospital having several surgeries on my knees, feet, and back, and having leg braces and back braces made. I tried to do a lot of physical therapy to try to learn to walk, but I just wasn't strong enough with my condition; and my breathing symptoms always made me too "breathy." So, I've spent my life in a wheelchair. Despite that, I've received my education like anyone else. In 2004, I graduated high school with a 3.7 GPA. Then, a year or so later, I decided to further my education and attended a local community college. In 2009, I graduated with my Associate in Arts degree with a 4.0 GPA and as a member of the Phi Theta Kappa Honor Society. Unfortunately, my health was deteriorating. My breathing issues were bad, and I was unable to leave the house for over a year. But then, miraculously, after going to numerous doctors and advocating for myself to receive help with my health, I finally received a treatment almost a year and a half ago that helps a little with the muscle weakness and breathing symptoms. Don't get me wrong, I still have a lot of weakness and breathing problems. But I'm feeling a little better than I was before. This has made me want to move forward in my life again.

The problem is I have to depend on my parents to go everywhere. I'm thankful for all my parents have done for me, but I feel like I can't be my own adult at this point in my life. I have a lot of doctors appointments that put a strain on my mom with always having to take me. And I'd just like to be able to do more for myself in general. My main goals are to try to move out in the near future (I'll probably have to get a personal care assistant for that) and to go back to college to get my bachelors degree, which will hopefully lead towards having a career in the future. I feel having my own vehicle is essential for these goals.

When I was 20 years-old, I started working on my driving with Vocation Rehab and received my license from the local DMV. I kept looking into getting my own vehicle, but they're so expensive with the type I need. With the type of conversion vehicle that I need, they usually range in the $30,000's, even used! New ones are $40,000 - 60,000! I just can't afford that. :( I need a drop-floor minivan, so that I will be sitting up high enough to see the road good (I had too much trouble with that when trying to drive a car), and I need that to load my electric wheelchair up independently and be able to go out on my own. I would be so grateful if I could have my own vehicle. It would mean the world to me. I just think it would help me with so many aspects of my life and really give me that push to have my independence and be confident in becoming my own person, so that I can branch out into the world. I'm asking that the kind people on this site please donate for my cause and help make it more possible for me to obtain my first vehicle. Even if you only donate a dollar, every dollar counts! So, please take the time to help me achieve my goal. Thank you!
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