A family health story: A dad's fight to keep his son alive

August 4, 9:04 PMChicago Family Health ExaminerJasmine Jafferali

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Meet Pat Girondi, trader, father of three, musician, the founder and CEO of Errant Gene Therapeutics and is on a mission to raise awareness for Orphan's diseases.  His first son, Rocco was given ten years to live back in 1992.  He was diagnosed with a rare, genetic blood disorder called, Thalassemia.  Thalassemia causes the body to make few red blood cells and less hemoglobin, causing anemia, fatigue and mild cases of Thalassemia can often be overlooked as iron-deficiency anemia.  Severe cases such as Pat's oldest son, needs regular blood transfusions to stay alive.  Regular blood transfusions is needed for his son, every 18-22 days.  

When Rocco was first diagnosed, he began doing intense experimental medicine.  In the US under the regulations he could only continue in the hospital where the researcher was. It was cost prohibitive and impossible, Pat decided to take his family back to Italy where his son could receive proper treatment.  He is glad he made the decision.  "Italian doctors understand the blood disorder" Girondi says, "it is so rare in Chicago, that maybe 20 people in the entire Chicagoland area have it."  He truly believes they saved his son's life. 

Thalassemia tends to run in those with a Meditarrean heritage, including Italians, Greeks, Middle Easterns, Asians and African decents.  He said it is found mostly with those who live on the "ocean."  About 15 percent are carriers.  It is an easy and simple blood test that can find the blood disorder. 

In 2007, Pat founded the Orphans Dream Foundation, a not for profit organization that supports research in Orphan Diseases. Orphan's diseases are classified as a disease that receives little or no research funding because they are deemed unprofitable by large pharamceutical companies. 

In addition to his work as a trader and biopharmaceutical executive, Girondi is also an accomplished musician. Two of his tracks were recently featured in the Italian film Foccacia Blues and his third album with The Orphan’s Dream Band released Orphan’s Hope this summer. The band exists to raise awareness and funding for the Orphan’s Dream Foundation. All proceeds from album and ticket sales to the band’s events go directly to the organization.

Girondi currently splits his time between Bari, Italy and Chicago.

I had the opportunity to meet and talk with Pat, here are some questions that I asked him. 

1) How was your son first diagnosed with Thalassemia?  Patients become weak and lethargic because of their hemoglobin, the oxygen carrier in the blood is low.  Blood tests showed he was sick.       

2) Was it a quick diagnosis or did it take some time and research? We knew within a week from the initial blood test.   

3) Were there any significant symptoms that lead you to believe he had this rare blood disorder?  Lethargy and fatigue

4) Does anyone else in your family have Thalassemia?  It is a genetic disease.  Both his mother and I are carriers of the trait.  It is mathematical.  Each of our children had a 25 percent chance of being born sick. 

5) How did you find the time to start the Orphan's Dream Foundation in 2007?  I have always tried to give back for my great luck in life.  I am surrounded by people from around the world that have rare diseases.  At any given time, I may be working on a half dozen cases.  Given my experience in this field, I have a lot of services to offer to people in similiar situations to my own.  I only do what I believe is correct.  I always try to find the time to do what is correct. 

6) Tell me more about the Errant Gene Therapeutics and the new FDA approved experimental treatment?  We will soon be in patients...It is a gene therapy and has been in mice and primates.  The principal participant researchers are at Sloan Kettering and the research team is made up of dozens of researchers from Singapore to California.

 7) Has your son made any dietary and/or supplemental changes to help improve his condition?  For example, certain foods can cause anemia.  I just wondered if there has been any links to the foods he eats that can exaborate his condition.  My son must take medication to get the iron out of his system.  The iron comes from transfusions.

8) What can you advise to families who have children with rare health issues?  What can they do to get the care and attention they need?  People need to confront any major problems with resolve and patience.  Every disease is different with different conditions and needs.  They must be confronted one by one

We had a delightful conversation about Orphan Diseases, Thalassemia and everything else in between.  He gets emails, phone calls and texts at all hours of the days from families looking for a cure, answers or for some help with their given conditions.  He said, he pledged to God after his son's diagnosis he would help other's find ways to get answers to their condition.  As with many parents who have children born of any type of disease, I asked him if his first born son stopped him from having more children.  He said absolutely not.  In fact, his second son was already born and tested right away.  His results came up negative.  He and his wife went on to have a third son, who also tested negative.  He said children are gifts from God and are rewarding and a pleasure to have.  You can tell when he speaks of his children, he really enjoys them.   In his voice, they have a strong bond in supporting each other with love and respect.  He says at the end of the day, it is about being effective and to help as many people as one possible can.  I think Pat is doing exactly that. 

For more info: Follow Pat on mySpace, become a fan on Facebook and view his website.  All of the proceeds to his newest CD, Orphan's Hope goes towards research on Thalassemia and Orphan's diseases. 

The Orphan’s Dream Foundation is currently sponsoring clinical trials in humans for Thalassemia and will focus on Sickle Cell Anemia in the near future.