by Emma Catanzaro, Alex's mom
Let me start at the end by telling you that Alex is today a happy,
loving 4-yr-old. If you saw him, you would never know he has anything
wrong with him. You would have no idea what this little boy has
endured and how much he has touched the lives of everyone around him.
We are very thankful for the Alex God gave us back on March 12, 1999.
That is the date that Alex had 70% of the left hemisphere of his brain
Alex's story is a long one and I'll summarize as best I can. On
December 3, 1997, we were blessed with the birth of our second son,
Alexander "Alex". He was a beautiful, healthy boy. I had a full-term
pregnancy free of any complications. Alex was like any other infant.
He cooed and smiled and started rolling over at about 4 months.
At around this same time; however, we became concerned because he was
crying a lot at certain times of the day, sometimes to the point that
he was inconsolable. He was prescribed Zantac thinking it was a reflux
problem. In the meantime, I began noticing that he would startle, but
what made it different than a regular baby startle (Moro reflex) was
that it came in a series of 4 or 5 startles and his eyes opened wide.
This would happen when it was quiet, noisy, and at anytime of day. I
knew something was not right so I continued to keep a close eye on my
beautiful baby boy.
One day, while I was working in the kitchen, I heard a bang and Alex
started to cry. I ran over to the next room where he was in an
Exersaucer playing with his brother. He was fine and had stopped
crying. Two seconds later, before I had a chance to reach him, I saw
him slam his head down and begin to cry. I picked him up and as I held
him close I noticed a series of "crunches." I immediately called the
pediatrician who said, "It sounds like you're describing seizures."
Needless to say, I fell apart. Alex's older brother Anthony stared at
me puzzled while I cried. That Wednesday, what I thought was the worse
day of my life, an EEG was scheduled for Friday morning. Those 2 days
felt like forever. My husband and I tried hard to stay positive, stay
strong and act "normal" for Alex and his brother Anthony. We had no
idea what lay ahead.
On April 17, 1998, big brother Anthony's 2nd birthday we got news that
would turn our world upside down and forever change our lives. Alex's
EEG showed hypsarrhythmia and Alex was diagnosed with infantile
spasms, a form of Epilepsy. We bombarded the neurologist with
questions about his prognosis "Will he be normal? ..Does this cause
brain damage?.." Almost all were answered with "..anything is
possible...we can't know for sure..".
Two days later, still in disbelief, we found ourselves admitted in the
hospital for the whole routine (urinalysis, blood work, spinal tap,
MRI.). All of the results were negative & normal. Alex fell in the
idiopathic subgroup of infantile spasms which meant there was no
apparent cause for the spasms. Fortunately, this meant the odds were
better that the medications would control the seizures and that
possibly he'd have a more normal development, thank God. The next day,
we were taught how to give our baby boy his ACTH shot which I think
hurt us as much as him. Ironically, I felt better administering them
myself than having the visiting nurse do it. Believe it or not, she
came and watched Anthony while I did the shot.
Even though the ACTH gave Alex 2 seizure-free months, eliminated the
hypsarrhythmia, and helped him do a lot of catching up it wasn't our
"miracle drug" and due to serious side affects we were forced to stop
it sooner than the neurologist wanted. After trying several drugs
including Vigabatrin, Clonozepam, Topamax and Depakote, we opted for
surgery. Alex's EEG showed that the seizures were coming from the left
side and the slight weakness on his right side reaffirmed that he
indeed had a focal point. The final test called the PET scan confirmed
that Alex was a surgical candidate.
March 9 and 12, 1999, almost 1 year after his diagnosis, he had his
surgeries in Detroit, Michigan at Michigan Children's Hospital. The
first was invasive monitoring where grids of electrodes are placed
directly on his brain to further pinpoint the problem area. The second
was the actual resectioning of his brain where they removed 70% of his
left hemisphere. They spared his motor and sensory cortex.
Immediately following surgery he had a twinkle in his eye that told us
he was there. We had freed the demon that kept him trapped inside his
little body. The change was miraculous. Alex went 6 months without
seizures after the surgery and he did a lot of catching up.
Unfortunately, the seizures came back, but the same meds that didn't
work before surgery are now able to keep them somewhat under control.
Today, Alex is a happy, healthy, boy who will be celebrating his 5th
birthday in December. He loves to cuddle, run outdoors and enjoys
wrestling with his two brothers. He now communicates all his needs to
us. Sometimes I find myself holding back happy tears after answering
one of his questions. I still can't believe this is my little Alex
talking to me! He is at about a 2 ½- 3 year level in cognitive skills.
We continue to battle his seizures, but the surgery has given our
little boy a much better chance at a "normal" life. I know we still
have a long road ahead of us, but we have learned to take it one day
at a time. We are more than grateful for all the things he learns
Alex has taught us more than he'll ever know. He has taught us to
appreciate the little things in life, things that we parents usually
take for granted. He has instilled a deeper understanding of the
importance of friends and family and appreciation of life itself. He
has inevitably changed our lives forever.
For pictures of Alex, updates, his full story, or to read the journal
of our experience with surgery, visit his website at
started this web site to share with other parents our experience and
to let them know they are not alone. I hope Alex's story gives others
hope when it feels like there's nothing else to hold on to.