New Board Member: Joseph Vigliotti
How did you get involved with CAF?
Joseph Vigliotti: My wife Lisa and I knew we were carriers, so prior to Lisa getting pregnant, we saw a genetic counselor. She advised us that if we decided to have a child, the child would have a 25% chance of having thalassemia major. Lisa and I thought long and hard about it and with all of the other statistics that they throw at you when you are considering having a baby, we thought the odds were more likely than not in our favor that our child would not have it. No parent ever thinks that something like this will happen to their child and I thought that with only a 25% chance and all of the other possibilities of illnesses that we were presented with that were greater in likelihood, thalassemia just was not one that I thought was something that we should be extremely concerned about. I also prayed every day that God would remove this from us but that his will be done. No matter what, we were going to love and care for our child despite whatever the outcome would have been so we decided to move forward and Lisa became pregnant.
After AJ was born we discovered through the newborn blood screening that AJ did, in fact, have thalassemia major and that he would have to undergo monthly blood transfusions and at that point even though I knew it was a possibility my whole world fell apart. I was a new father who had no idea how to care for a baby and now I had to care for a child with an illness that I could barely pronounce, that very few people had ever heard of, let alone knew how to treat effectively. I felt like my world was closing in around me and that I was all alone and had nowhere to turn and that I simply had no idea what to do or where to go. How do you treat this? What can I do? I wanted the best for my son, but what was the best?
Then the hematologist suggested that we contact CAF. My wife and I contacted CAF and she spoke to Eileen Scott. From the first time she spoke to her, I could tell from when she got off the phone she was more at ease and had more comfort and information than she had before and I knew that we found a special organization.
We then heard about the Patient Family Conference that was being held in Philadelphia and we were sent registration information. We were uncertain as to whether or not we should go, but I said we just had to. We had to meet other parents and patients to see how they managed their day to day lives and if they were doing ok. Our son looked fine, he acted fine, but everything we read or heard just told us that he was not going to make it. The survival probabilities and treatment options were limited and the outlook was grim. That all changed when we went to the conference. We came away with more hope and information from that weekend than we ever thought was possible. We saw happy people, thriving people and that allowed us to get through the treatments and our daily lives with a sense that we knew that AJ was going to make it. AJ does have this illness, but that does not mean that he cannot live a full and happy life no different than any other child. That was what CAF and that conference did for us. It dispelled all of the darkness and misinformation that plagued us for the first year of our son’s life and all that for free! What other organization out there does that?
What motivated you to become a member of the Board of Directors of CAF?
When the information for the Care Walk came out, my wife and I said “Sure, let’s give it a try, maybe we can raise $2,000 for the Foundation.” What has happened since then has truly been awe inspiring. We are on our way to raise $20,000 for the Care Walk in our first year and we now have 90 people coming for the Walk and the number is increasing daily. The entire community has rallied around our family and our son and it has inspired me to want to do more for CAF and for the patients who suffer with thalassemia on a daily basis. Businesses have donated money, food, their store for a can shake and various supplies. I want to give back to the Foundation that has given my family so much. They have given us hope, they have given us financial resources, they have given us invaluable information and access to world class doctors, they have welcomed us with open arms and said, we are here for you and we understand what you are going through, you are not alone at a time when I felt nothing but alone. If I can do that for one new family who feels as alone as I did, if I can raise funds for one family and give back one ounce of the happiness and peace that CAF has given to me, then I will consider my work on the Board a success. I look into my baby’s eyes and one day I want to be able to tell him that your Daddy had something to do with a cure in some small way. That may be wishful thinking but it is something that I hope for on a daily basis.
Why do you think CAF is important?
CAF is important because it is an organization that provides access to cutting edge information and access to doctors in the field of thalassemia that are truly the best in the world at what they do. It is a patient advocacy organization for a disease that is urgently in need of advocacy and awareness at every level. People are simply not aware of this disease and they are not educated as to how to effectively treat it and that it is not a death sentence. People need to know that there is hope and there are people out there who care and who can help. CAF is that organization, and with the dedicated people who I have met who work with CAF, I have no doubt that this message will shine brightly to not only our community but to the world.
What else would you like to say?
I am honored to be a part of the Board of Directors and I look forward to many years of service to the patients and families. I have never been more hopeful than I am since I have been a part of CAF and have met the wonderful people associated with the Foundation. They are all truly selfless and dedicated people who have the patients and their families first and foremost at heart. Every action and event and cause I undertake will be with AJ and the other patients’ best interests at heart and I hope that I can be a productive and valuable addition to an already amazing Board of Directors.