The Most Common Rare Syndrome You've Never Heard Of

Saturday, June 1, 2013

Yesil Cruz--Baby Brother 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.

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.