over four years ago my wife Krissy gave birth to triplets! Sadly, within moments after all three had
joined the world, one of the doctors uttered the following words to us, "Your
son has no eyes." I still feel the shock
from that statement to this day.
did we know that was just the start of Griffin's difficult journey on our
little blue planet. Over the course of
the next six months there were lots of tests done including three genetic tests
to determine what else might be wrong with Griffin, as it became obvious there
were other issues at hand. After the
third genetic test, the doctors determined he had SOX2
anophthalmia syndrome. What is SOX2 anophthalmia syndrome you ask?
anophthalmia syndrome is a rare genetic disorder characterized by abnormal
development of the eyes and other parts of the body. SOX2 anophthalmia syndrome is estimated to
affect 1 in 250,000 individuals. About 10% to 15% of people with anophthalmia
in both eyes have SOX2 anophthalmia syndrome,
like Griffin. People
with SOX2 anophthalmia syndrome are usually born without eyeballs
(anophthalmia), may also have seizures, although Griffin doesn't thankfully,
brain abnormalities, slow growth, delayed development of motor skills (such as
walking), and mild to severe learning disabilities. Some people with this condition are born with
a blocked esophagus, which is often accompanied by an abnormal connection
between the esophagus and the trachea. Genital
abnormalities have been described in affected individuals, especially males.
Griffin, now four years old, has all
of these including being partially deaf in both ears, he can't eat or drink due
to the esophageal issues and survives on a liquid diet through a feeding tube
in his stomach, and although he is working hard in school learning sign
language and braille and using communication switches, he is still unable to
communicate meaningfully with us. We
feed him three times a day via his stomach feeding tube, and he is connected to
a pump at night that feeds him the rest of his food in order to get enough
calories to grow. He is still not able
to crawl, but can roll over from back to front.
He is unable to keep his head upright when in a seated position for
extended periods of time, but he is getting there! He tends to "˜overheat' very easily making
travel outside or in the car often difficult.
I could go on and on with his other issues, trips to the hospital, and
surgeries, but I want to shift to the positive aspects of Griffin's life and
our plans to make it even better!
Griffin attends a special school
where he gets specialized deaf-blind assistance and therapy from several
fantastic teachers and therapists. My
wife Krissy and I work with him at home on a daily basis trying to help him
learn to crawl, sit upright, and stand, as well as more specific things like
holding on to toys, learning to swallow, and trying to talk. Krissy's parents, Bev and Gary, also provide
invaluable help with Griffin working with him, babysitting, picking him up from
school, going to doctors appointments, and financially. We would be lost without their help. All these amazing people that help make life
better for our son we have dubbed "Team Griffin."
What we are hoping to do is raise
money to help expand our house to make it accessible for the Griffer (as we
often call him).
We originally wanted to move and find
something a little more suited to what he will need, but like so many people in
recent years, we found ourselves vastly underwater on our mortgage due to
plummeting housing values which made moving financially impossible, short of
walking away from the house (foreclosure).
So we decided to look into building on to it. Right now it is a 950 square feet bungalow
style house that will soon become too small for him as he grows. He has a custom wheelchair but due to the
nature of our house, he is unable to use it in our home and we are currently
carrying him throughout the house. The entryways are too narrow for a
wheelchair and our bathroom barely holds two adults. We won't be able to get a wheelchair through
the door, let alone be in the bathroom with it and manage him into the tub
We plan to tear off the entire back
wall of the house and expand it outwards to add a handicap accessible bedroom
complete with a lift system for when he is too big to lift, a handicapped
accessible bathroom connected to his bedroom, and a larger kitchen/dining room
with two exterior doors to have enough room for Griffer to join the rest of the
family when we eat and to get a wheelchair in and out of the house. This will also allow Griffin to have a
dedicated space for his specialized equipment as he currently shares a bedroom
with his brother and sister!
We have enlisted the help of a
family friend who is a builder to help reduce the cost of the rough construction. Also, my father-in-law, my brother, and I
plan to do all the finish work ourselves to save as much money in labor as we
can on this project. We are planning to
start construction this Spring!
So that is what we are hoping to do to help make life a little easier for Griffer and also allow us to better help him. Thank you for reading and please feel free to share!