Help Get Jessica A Wheelchair Van

Hi everyone!

My name is Jessica and I am 6 years old. I was born with a rare autosomal recessive neurodegenerative disorder called Pontocerebellar Hypoplasia (PCH), and I have Type 2 to be exact. I was born a beautifully perfect little girl and no one could have suspected anything wrong. However, it became recognizable within the first few months of my life that I was showing signs of swallowing incoordination, respiratory difficulties, I would cry in pain often, and I was not gaining weight or reaching my milestones. Through several tests, scans, and doctor visits it was discovered I had a disruption in my brain development and that I am missing fifty percent of my cerebellum and pons. I experience impairments in my mental and motor development, I have frequent involuntary muscle movements, seizures, and I do not have the ability to walk, talk, or feed myself. Despite these challenges, I am still accomplishing many things and my family is so proud of me. I love music, pretty lights, listening to mom and dad read me books, and my favorite show to watch right now is Bluey on Disney Jr. Most importantly, I am so full of life, love, and joy just as any other kid in this world. Ask any of my family members and they will tell you how big my heart and smile are!

Due to my condition, I have several types of therapy I attend 2 to 3 times a week, as well as many other doctors' appointments throughout the year. Of course my family and I want to be able to travel safely to those necessary appointments, as well as to all the other activities I love doing (like going to Mamaw and Papaw's house and many other great family members out of town). I am currently outgrowing my carseat as I am 53 pounds and continuing to grow nice and strong, and my wheelchair itself is 30 pounds as well. When adding that together, my parents are starting to have trouble lifting me and my chair into our vehicle. Since I don't have the strength or balance, my mom and dad simply have to be heavily relied upon with all of this weight (literally and figuratively). This has caused them to have back and muscle pain for example, and I really don't want to put this strain on them. They love me so much and would do anything for me, but as I grow it is simply becoming too difficult to transport me from my wheelchair into and out of the vehicle we have right now. It would help us tremendously to have a handicapped accessible van that would allow me to be wheeled in and out of so much easier and faster. The problem we have is that these vans cost a lot of money. A large portion of money is being used for other equipment that is needed to help me get around and live more comfortably, such as a new stair lift/patient lift in my house that allows my parents to help me get upstairs for my bath and bedtime. Having safe and reliable transportation is essential for me and having a wheelchair accessible van would mean the world to us.

My parents and I would be ever so grateful and appreciative for your donation towards our van. Anything helps and gets us closer to reaching our goal. If you are unable to give, that is okay and we would still be so thankful for you sharing this page as that is beneficial too. Thank you for taking the time to read through this, and we hope you have a wonderful and blessed day!