handicapped accessible van for Jake

Hi, my name is Jacob Christopher Essency, but most people know me as Jake, and this is the story of me.  I was brought into this world by the two greatest parents on May 19, 2004 and was diagnosed with something called Dandy Walker Malformation.  This means that I am missing a small portion of my brain (the Vermis) which is the part responsible for balance and coordination.  I spent the first two weeks of my life on a ventilator to help me breath.  When I was two months old I finally got to go home for the first time on my daddy’s birthday.  Mommy and daddy had to learn how to care for me with lots of medication and a feeding tube, cause I can’t eat, it hurts my tummy.  At six months old I underwent open heart surgery to fix the two holes in my heart and I spent two long weeks in the ICU.  I also spent my first birthday in the hospital, and I didn’t come home for six months.  I spent all that time at children’s hospital Boston so the doctors could try to help me with my seizures and to diagnosis me with Three Cs Syndrome.  I guess this is pretty rare because mom and dad told me I’m one in a million (3 Cs effects one in one million births). 

            Let me explain how 3 C’s affects me.  The first C, cranium, refers to my facial deformities and causes me to have a recessed chin which makes it hard for me to breath because my airway is small.  This led me to have a tracheostomy before my third birthday. Now I can breathe better and have fewer trips to Boston. The second C, Cerebella, Refers to the Dandy Walker Malformation which is the missing part of my brain which causes me to have seizures and developmental delay.  The last C, Cardiac, refers to the holes in my heart.  I know this seems like a lot… But there's more! My tummy doesn't work properly as I mentioned before, therefore at two years old I had to have a central line put in my chest. This is a tube that puts nutrition directly into a main artery in my heart. This form of nutrition helps me grow and get stronger. However, my liver doesn't like it, It can cause irreversible damage to my liver. My central line also puts me at great risk for serious infections.

            Even though I am now 10 years old, I have developmental delays which make me act like a newborn baby.  I can move my arms and legs and turn my head from side to side.  However I need a lot of help to do everything else.  For example if I am tired of the position I am in I have to wait for someone to figure out I need a position change.  Because I have a trach I can't cry or vocalize at all. So I have to wait for my mommy or daddy to realize that I'm sad so they can help me.  Sometimes this is frustrating. 

As I mentioned earlier, I have the two greatest parents in the world, but they can only do so much.  My mom can't work because I need her to take care of me, and that leaves dad to support all three of us. But what I really need is a van that my parents can transport me to my doctor’s appointments, therapy and the park where I love to swing.  I could use some wheels that can take me in my wheelchair. I would appreciate all you can do to help my family and I.

Jake