This is Gabriel's Story

By Donna Colucci

What do you do when two very nice physicians sit you down and kindly tell you why your two-year-old son is pale, listless and swollen throughout his body, when they call the condition Nephrotic Syndrome, and when it is pretty clear that not a whole lot is known about it?

In my case, I went straight to church and cried my eyes out.

But I'm not here to make you reach for the tissue box.   My purpose is to tell the story about how our son Gabriel overcame that miserable year of 1996 and how my husband Dominic and I found a mission that we are hoping others will join.

Like so many other parents who have dealt with Nephrotic Syndrome, it came at us out of the blue. We noticed that little Gabriel was not himself, that he was swelling around the eyes and that he had a low temperature. Then he stopped urinating completely. We spent days as doctors tried to figure out what was wrong, at first misdiagnosing him completely, then sending us to Mount Sinai Hospital in New York City.

That first night in the hospital he was put on an IV line of Lasix, a diuretic, and Gabriel went through one soaking diaper after another. He was a bruised mess when the swelling went down, but at least he was getting rid of toxins.   The next morning we felt fortunate to meet Dr. Isabelle Roberti and Dr. Lewis Reisman, who broke the news.

What in the world is Nephrotic Syndrome, I wondered.   The doctors explained what they could, but who can absorb anything in that setting? I began looking for a support group to turn to, for books and reference materials.   There wasn't much help or hope and we began several years of relapses, hospital visits, peritonitis, blood transfusions, dehydration and edema.   We spent many a week in the PICU at Hackensack University Medical Center and St. Barnabas Hospital in Livingston, NJ.

Parents of children with this condition know the drill.   It was frustrating and tiring.   It was a very long and lonely ride.   I like to call it "Neurotic" Syndrome because of what it does do all concerned.

My son was nine when we met Dr. Kenneth Lieberman, of Hackensack Medical Center.    He introduced Gabriel to cytoxan, a drug usually used in chemotherapy. Thanks to that treatment, Gabriel, now 11, has been in remission for some time.

But we were not about to forget about this condition or those who suffer from it.   I enlisted my name in an online support group called, Kidcomm.org and realized that there were people out there in our shoes and suffering more than us.  

And then one day I came across the NephCure Foundation web site. It is the only foundation dedicated solely to finding the cause, treatment and cure for NS and FSGS.

There isn't a day that goes by that I do not speak of NephCure.   I've been deeply involved in NephCure fund-raising events aimed at supporting research for a cure.   Since our son is in a medicine-free remission, I feel the need to be thankful and know that our lives have been blessed, for it has given me the strength to help those who have not been as lucky as our son, Gabriel.   

If anyone would like to contact us, please feel free to do so at decesquared@verizon.net.