My name is Marco Caban and am married to my wife, Sylvia for 19 years this August 2012 and we have 3 children ages 5, 10, 16.  Though we didn’t plan it this way things worked themselves out that Sylvia was able to stay home since September 2001 to care for our 5 year old daughter and newborn son.  Sylvia was having a difficult pregnancy with our son that summer.  She was suffering with a severe case of sciatica.  Nevertheless, she continued to commute via the LIRR and NYC Transit. She was supposed to work until September 14^th, instead her OBGYN had her go on bed rest due to some complications with the pregnancy.  That kept her home from her job and the tragedy of 9/11 at the World Trade Center.  Needless to say we thank our Lord, for everyday is truly a new day.    Our son, Christopher was born the 21^st of September 2001.  We call him our miracle baby. 

But things weren’t so easy.  Christopher was born with some breathing issues that we later found out that were caused by seizures amongst other diagnoses. We were now faced with some really difficult decisions. Our lives had been flipped.  When the time came for Sylvia to return to work we felt that she should stay home.  We agonized over this decision for the entire time she was home.  This was a huge decision because her income was much higher than mine. But again, God was faithful.  That winter, I received a pay raise to help us make ends meet.  Financially we were OK.   Today Christopher is a special needs child with some cognitive delays but he is a true joy to have around. 

Now it’s July 2007 and we just had our third child, Isabella. I began a new job, at the Federal Home Loan Bank of NY (“FHLBNY”), which was a very well run bank with the implied credit of the US Government, so I knew it wasn’t going anywhere.  I felt things were in place for my family and I.  Life was good.

In May of 2010 I received the devastating news that I had Multiple System Atrophy (MSA).  Receiving a diagnosis of MSA was both heart stopping and overwhelming.  It took the doctors about 4 years to determine what was going on with me.  There were so many questions and no answers.  The worst answer the medical community does offer is that MSA is a progressive neurodegenerative brain disorder. The disease tends to advance rapidly over the course of 7 to 10 years, with progressive loss of motor skills, eventual confinement to bed and death. There is no remission from the disease. There is currently no cure.  I’m at the point where I find myself unable to do the simplest of things; bathing, dressing, walking, cutting my food and more.

And just when I thought it couldn’t get worse, just this month August 2012  I end up in the hospital for 10 days with a pneumonia which actually led to a new discovery-a leaking valve in my heart.  I now am a candidate for open heart surgery.  The worse part is that according to the doctors it has nothing to do with my underlying condition, MSA. 

I think the worse part of it all is knowing that I will not be around for my family. That my wife will have to continue to fight for our special needs child and raise our two other children without me.  I feel I’ve been cheated out of life and worst of all that my kids and wife have also been deprived of special memories such as playing catch with my son, walking my daughters down the aisle when they get married, and growing old with my wife.

One of the major purposes of this fund-raiser is to help me live out the rest of my life as full and as normal as possible. But, also to bring awareness to this devastating disease.   We’d like to be able to share as well as receive information about MSA in order to be better able to cope with the day-to-day challenges of living with MSA.

Some of the needs that will help my daily challenges:

Around the home:

·      Elevator for wheelchair to have access to the basement as well as main level.

·      Ramp to have access in and out of the home.

·      A handicapped accessible bathroom.

Transportation needs:

·      Wheelchair Accessible Van

It is not in our nature to ask for help and many who know us know this to be true.  But as we’ve been told repeatedly, people want to help us.  There are people that have access and the capability of making these sort of life-changing events less devastating and manageable.   It is because of this reason that we are stepping out of our comfort zone and asking for assistance in this very difficult time. 

We ‘d like to thank you in advance for your sincere concern for our family.   And we are hopeful for wonderful blessings to come.