My baby brother
passed away 18 years ago, when I was 11. I never understood why he was always
sick and why such a small baby had to go through so many medical procedures.
Recently, while
going through some paperwork, I found an autopsy report and a letter thanking
my parents for allowing the autopsy. All this time I thought my baby brother
had one purpose in life--to change our lives in some way. But reading that
report made me realize he had a bigger purpose in life. Because of him doctors
could study this rare condition. So in some way he made a difference not only
in our lives, but he also contributed back to society. That was his purpose in
life.I could never thank Dr. Alvaro Galindo enough. He made things so much easier for us. He was compassionate toward my family.
I didn't know
back then what I know now. Ivan was diagnosed with Noonan Syndrome and had gone
through surgery the day after he was born. He had an aortic valve graft. He
spent most of his days at UCLA. When he got to come home he was always
surrounded by home health nurses, and around the clock medications. In two
occasions we had to call 911.
At that time we
lived near Northridge Hospital. My mom was told that if he was ever to have an
emergency Northridge Hospital did not have the necessary equipment to take care
of him. The day he passed away I remember my mother was concerned about him
because his lips and nails were bluish. And knowing she had no other choice
took the next bus available to UCLA. Unfortunately she got there too late. He
passed away of a heart attack.
Though there
are sad memories there are good ones too. I heard him laugh. I never knew a
baby could be so happy and able to smile while still going through all kinds of
medical procedures.
I know there’s
hope to finding a cure. Maybe God brought him here for the sole purpose of
making people more aware of this condition. I didn't know about Noonan
Syndrome. I had to do research in order to know what my brother had.
My brother
lives in my heart. This is why I decided to contact you to somehow contribute
to this cause. I have nothing to offer but my support. I know that many things
have changed and the medical field is well advanced now. I never lost hope
while Ivan was alive. I still have hope that one day we will be able to find a
cure. Ivan changed my life those 5 months he was on earth. Because of him I
want to become a registered nurse.
