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| Ivan |
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.
 |
| Yesil |
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.
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The article above was written by a guest blogger. The opinions and ideas written belong solely to the guest blogger. The RASopathies Foundation and Noonan Syndrome Foundation DO NOT endorse political candidates and religion or religious preferences.
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