What This Means To Me
Because I can not support my head or protect my airway I can not travel in a regular car seat. In order for me to travel in the car I have to use a special seatbelt that allows me to lie flat in the back seat. Due to my size it is becoming even more difficult, especially for my mom, to transfer me to and from the car. With this new van I would be able to travel in my specialized stroller. I can just be strapped in and wheeled in and out of the car.
This van would give me freedom to travel anywhere I need to go. It would allow me to not only travel in my stroller but for us to take my power chair along with us. I love to cruise around in my power chair but I am restricted to using it around the house because I do not have a way to transport it.
I can’t wait to take it to pre-school with me so I can play with all the kids. Sometimes it’s hard to watch kids around me play and not be able to join in all the fun. If I could take my power chair with me I could run around with all the other kids. This van would take a huge weight off my parent’s shoulder. It would allow them to take me to all my appointments and anywhere else I need to go with out searching for a car to borrow to fit my stroller, wheelchair and all my other equipment.
This van would give me so many more freedoms in traveling and being with my family. I can’t wait for the adventures it will allow me to have.
Because of SMA I have never been able to hold up my head, sit up by myself, crawl, stand or walk. The muscles in my chest are so weak that I need a machine to help me cough and another machine called a Bipap to help me breath when I’m asleep. When I was 8 months old I had to get a feeding tube put in my belly because I could no longer swallow my food. These past 2 years my Mom and Dad have worked so hard to get me all the equipment and medical attention that I need to fight this disease and now it is my turn to give back to them.
