Hi! My name is Isaac, but you can call me Bubba like all my family and friends do. I am 11 years old and I have been confined to a wheelchair my whole life. My mom and dad are trying to find us a safe, reliable wheelchair accessible handicap van to get me out of the house to appointments and maybe sometimes find a little trouble to get into at the beach, or the park, or maybe just a nice roll/walk down by the river. I have some great nurses who come play with me at home and take excellent care of me, but being stuck in the house all day, every day is not the best. I just want to get out and have a little fun like everybody else!
I don’t like to complain, but I’ve had a pretty tough life since birth. I was born two months early and spent the first month of my life in the Neonatal Intensive Care Unit (NICU) until I was healthy enough to finally come home. My first year was probably the hardest with 3 months of it in hospitals hearing words like failure to thrive, genetic issues, neurology issues, countless different possible syndromes and conditions, but no real answer until a geneticist discovered a mitochondrial DNA complex 4 issue. As we understand it in simplest of terms, that basically means that step 4 of a 7 step process to turn proteins from food into energy just wasn’t working, and there isn’t really anything that can be done to make it work. I have been in and out of hospitals all my life with symptoms like seizures, dystonia, scoliosis, inability to eat by mouth, severe developmental delays, and the list goes on and on. After countless tests with many different geneticists, neurologists, and good people from all disciplines of medicine, this is the closest thing we have to a real diagnosis. Since there’s no name for it, we call it Smiling Bubba Syndrome.
Today, I can’t walk, I can’t talk, I can’t do most things that typical people can do, but I CAN certainly smile and laugh, and most importantly, I can love! Family, friends, medical professionals, and pretty much anybody that takes the time to get to know me can see the love in my eyes, and I can feel their love too! The past year has been the best year of my life! Since they removed the spinal rods last year, I have become more mobile than ever. I will never be able to walk, but I can do the army man crawl all over the house!
Oh, did I mention I’m cute? Yeah, I’m so cute that I can get away with all kinds of mischief! No matter what I do, when I flash that smile, everybody just loves me! How could they not?
Anyway, mom and dad set up this page to request help in getting us wheels. If you have never shopped for a wheelchair van, you might be surprised to find out that new vans are $50k and up, and good used vans are $25k and up. The conversions that make these vans wheelchair accessible can be more expensive than the van itself! Keep in mind that we’re talking about comparatively low cost models like a Dodge Caravan, not a luxury vehicle, but definitely enough to meet our need. Our goal is to find financial assistance in getting a good used van. The price of a new van is simply out of reach, and unrealistic for our situation, so we are hoping for a good used van. We do not expect this initiative to pay for the whole van, again, we feel that is unrealistic, and we also respect the fact that ultimately, this is our financial responsibility. Unfortunately, a single income for a family of five makes this impossible to do alone.
We appreciate anything you are willing to do to help, and we hope your generosity can help put us in a position to make the purchase in time for my birthday in March 2017.
Thank you so very much for reading my story, and thanks again for any love and support you send my way!