is my favorite
All about Sean
"Life isn't about waiting for the storm to pass.
It's about learning to dance in the rain."
My Medical Background
My twin sister and I were born on Monday, June 30, 2008, via emergency C-
section at 30 weeks and 2 days. I was born weighing 3 pounds, 2 ounces and
was 16 1/2 inches long. My sister, Kaity, was 15 3/4 inches long and weighed in
at 3 pounds, 1 ounce (dropping to 2 pounds, 9 ounces by day 2).
I suffered a bi-lateral (both sides) grade 4 (the most severe) inter ventricular
hemorrhage (brain bleed) when I was 2 days old. The first stroke occurred on
my brain's left side, affecting my motor control and usage on the right side of the
body. Language skills have been affected as well. A smaller stroke occurred on
the right side of the brain, primarily in the visual cortex.
Due to the large amount of blood in my brain ventricles, I developed
hydrocephalus. I had surgery on July 18 to place a reservoir in my head to
allow the doctor’s to tap off the excess CSF causing pressure around my brain.
Once the fluids tapped from his head to be clear and free from these old blood
cells from the bleed, I underwent a second surgery (on September 16) to place
a shunt in order to maintain constant control over the pressure in his head.
This shunt will provide the pressure control and relief that I would need for the
rest of my life. (I have already had two additional surgeries on the shunt.)
On September 2, while waiting for the shunt surgery, the ophthalmologist told us
that I was showing some early signs of ROP (Retinopathy of Prematurity).
This was unusual as I was now a mere three days from my due date and
considered to be of term age. She assured us this was no sign for alarm, it
would simply be monitored. Exactly one week later, the routine eye exam lead to
a positive diagnosis for ROP in its advanced stages. I was taken to emergency
laser surgery 2 hours later. With the surgery would come damage to the retina
development. I would face loss of peripheral vision, severe nearsightedness,
possibly even blindness. Without the surgery retinal detachment and blindness
was almost certain. Recovery from this procedure was long and difficult. A
week later I had the new shunt placed and came home on September 19, when I
was 81 days old.
I am legally blind due to the combined effects of the ROP laser surgery
(affecting my peripheral and central vision), optic nerve atrophy (ONA),
caused by the pressure put on the optic nerve by the IVH and
hydrocephalus (adding blind spots to my field of vision), and a cortical
visual impairment (CVI), a neurological issue resulting from the brain
hemorrhage making it extremely difficult for me to understand and
process what I see. I also have severe myopia (near-sightedness) and
wear glasses that correct my vision to 20/250. I also have spastic
quadriplegic cerebral palsy (CP) and shunt-dependant
Our family will again be sponsoring a family team for the
Trolley Run on April 28, 2013 and would love to have you join
our team, the Bud & Bug Brigade.
For athletes, the Trolley Run is the largest 4-mile timed race
and a great opportunity to clock your progress as you build to
other races. For less competitive runners and walkers, it offers a
fabulous and gradual downhill jog/walk from 75th and Wornall
down to the Plaza.
For our family, this race means so much more. Our younger
son, Sean (Bud), suffered a stroke when he was two-days old,
leaving him legally blind and with cerebral palsy (CP). The
Trolley Run directly benefits the Children's Center for the
Visually Impaired (CCVI), who has provided services to Sean and
our family since he was five months old. He is now attending
their preschool program with his twin sister, Kaity (aka Bug), by
his side as a sighted peer. This program is one of only ten in our
nation that supports children from birth to school age with visual
Another year at the Children's Center for the Visually Impaired
(CCVI) and Sean continues to shine!
- Another year at CCVI has given Sean the opportunity to
continue working on his braille... he can now braille his first
and last names all by himself! He is also wanting to braille
words like truck, train, ball, slide, and the names of his
family members and teachers.
- Another year at CCVI has allowed him to have intensive
physical therapy and orientation & mobility instruction...
Croc is now only for running on the playground and soccer
field, Sean now uses a single forearm crutch (Big Red) and
a white cane device (Scooby) to get around.
- Another year at CCVI has given Sean quite a voice... his
vocabulary has soared, his sense of humor keeps us in
stitches, he's competing with his siblings for equal air time!
- Another year at CCVI has given him better ways to use his
fine motor skills and to best use the vision that he has...
he's on track to return to our neighborhood school, ready
for kindergarten with his twin sister in the fall of 2014!
Please join us in celebrating another year of milestones;
another year of successes with the Bud & Bug Brigade in the
25th Anniversary Sabates Eye Centers Trolley Run to raise
money for the Children's Center for the Visually Impaired (CCVI).
We would love to have you join us and help our team grow (or
start a company team of your own). You can use the link above
or go to www.TrolleyRun.org and search for the Bud & Bug
Brigade. Please consider helping us say thank you to CCVI!
Because of the program they provide to Sean and our family, we
have so much for which to be thankful!
Thank you for your support!
Norm, Jill, Sami, CJ, Kaity, & Sean
Trolley Run 2013: The Bud & Bug Brigade