Jesse B.
Ohio
Birth Date - April 1, 2010
Main Diagnosis - Schizencephaly
THEME: REALISTIC Horses
Quilt Deadline: 5/1/15
Jesse's Story
On April 1, 2010, I was born to a homeless woman in
Cincinnati, Ohio, and at only four hours old, I met my forever family.
Besides having torticollis and reflux, I progressed quickly as an infant. I
was reaching, grabbing, scooting, rolling, and trying to sit by my six
months well check. Then slowly, things started to become more difficult for
me as my muscles tightened. Soon, I started losing those milestones until I
move to a vegetable-like state by nine months old. My pediatrician sent me
for an MRI on February 7, 2011 and we found out that I have Schizencephaly,
meaning that my brain did not fully develop while in the womb.
My family was very supportive as I started a new routine of specialist's
appointments to discover the extent that the disorder would affect me, as
well as therapy (Physical, Occupational, and Speech) to help me become the
best Jesse I could be. My sister Emily would learn along with my parents
how to play with me in a way that would maximize my abilities, and tricks to
stretch me during these play times. Just a few weeks after my diagnosis, we
even went to a conference in Cincinnati to learn more about what local
resources were available to me.
The extent that my disorder has affected me has continued to evolve over the
years with countless appointments,surgeries and procedures. My medical life
is very complicated, but it is not who I am; ultimately, I am a regular
preschooler with a different lifestyle. While I can't necessarily speak
because of the Apraxia, I can use ASL sign (current count is 72 signs!) and
an AAC (Augmentative and Alternate Communication) system
to talk to others, making regular choices daily. My favorite choices
are to play with cars, trains, and dinosaurs and to give hugs and kisses to
my family. I am ornery; laughing when my sister gets in trouble or cries,
fake crying when I don't want to work at therapy, and throwing toys and
balls to make others get them. I have received my second Ambucs Amtryke
(I already outgrew my first) and am learning how to ride an adaptive bike!
We do a lot of things that are considered completely normal, though. We
enjoy going to museums, parks, farms, amusement parks and sporting events.
I absolutely love watching sports on the TV and in person, especially our
local Dayton Dragons professional baseball team; I clap and throw my arms up
to cheer-sometimes even for both teams because I am so excited! We go tent
camping, enjoying bonfires, hiking and swimming. In 2012, we started a
tradition of going to an annual special needs family camp retreat at the
Center for Courageous Kids in Kentucky. While cooking, horseback riding,
swimming, woodworking, archery, bowling, and singing with other kids with
physical disabilities, our family finally is normal in every aspect. In
2014, we went to a Renaissance Festival that took my love of horses,
archery, and sword fighting and put them all together. I'm pretty sure that
I am going to be a knight now!
In the spring of 2013, I started school. I love riding the school bus to
and from school. Next school year, I'll be getting a service dog and the
dog will go to school with me! It'll help me open doors, pick up things I
drop, and alert the teachers if I am gagging or having a seizure. It'll be
great to have a dog companion.
CLICK HERE TO
SIGN-UP
CLICK HERE SEE WHAT HAS BEEN STITCHED
"Thank You"
We got Jesse's quilt today-which was perfect timing because he is sick.
He is now snuggling under it.
It is absolutely beautiful! Thank you!
