Michael Guglielmo’s tireless activism saved his son’s life, but only for five years. Where does he go from here?
Last year, the Good Men Project did an interview with Michael Guglielmo, who rose from prison to life as a father and activist, and who saved the life of his son Giovanni by registering thousands of new bone marrow donors, including several who were perfect matches for Giovanni.
A couple months ago, Giovanni died, at the age of five.
I followed up with Michael about how the loss of his son has affected him and the work he does for everyone afflicted with blood cancer and similar disorders.
What kind of impact has your donor activism had so far?
To date, the activism Giovanni inspired within me has led to the registration of over 50,000 people in the DKMS Americas bone marrow donor center, and 144 of those people have donated their stem cells, giving another person a second chance to live.
Could you talk a bit about the loss of your son and what it’s meant for you and the work you do?
I watched my five-year-old baby go into seizure, resulting in brain death and life support. I told his mom we had to let him go, and she agreed, so we surrounded him with everyone that loved him in the ICU at Boston Children’s Hospital. It was so ceremonial; the nurses printed his feet and hands and I washed them while crying, one foot after the other and then each hand. I told Christina to get in the bed with him and she wrapped herself around him rubbing his arms and body with her hands then she laid her cheek against his face sobbing and began singing “You are my sunshine, my only sunshine you make me happy when times are sad, if you only knew dear, how much I love you, please don’t take my sunshine away.”
While she was singing, I was on the other side of Giovanni, kneeling beside his bed, holding his hand with my forehead on his forearm crying. I remember exactly what the nurse said.
Michael, shall I disconnect the ventilator?
Yes, I replied.
Should I withdraw the medications keeping his heart alive?
Would you like me to give him a shot of morphine so that he does not gasp?
Yes, please give him a good shot of morphine.
It was the most painful but honorable thing I had ever done in my life. Over sixty days later and I’m just devastated. I have never felt such powerful emotions. They seize your body wrenching tears from it until you can re-capture your body and regain your composure. Giovanni was my baby, my world, and now I’m struggling to live without him in a home full of his toys and spirit.
Giovanni thought he was a gladiator so I gave him a soldier’s burial, dressing him in his armor, sword, and helmet purchased from the Coliseum in Rome by his godmother Elena. I put two gold coins in his pocket and two over his eyes when I closed the casket, to pay for his passage to Elysium.
Hundreds of people, from the Governor of New Hampshire to the SWAT leader who had once given the green light to shoot me, from teachers, family, friends, Hell’s Angels and mobsters, paid homage to my son. One friend pinned his medal of valor to Giovanni’s coffin, and his motorcade was led by the police and myself. wearing a Gladiator helmet on my Harley-Davidson, with the last Spongebob balloon I had bought for him at Children’s Hospital the week before.
His motorcade stretched miles through the streets of Manchester, and when we entered the cemetery, both sides of the road to his grave were lined with hundreds of pictures on stakes from his life, bringing both tears and smiles to my face upon seeing so many images of me and him.
I’m trying to convert the pain of his tragic death into strength but that, too, is a struggle. My goal now is to reap every drop of goodness I can from humanity in tribute for his sacrifice.
In Gladiator, one of Giovanni’s favorite movies, Maximus says before battle to his men “what we do in life echoes in eternity.” When I eulogized Giovanni I said, “Giovanni did not live in vain, and he will not die in vain. Today we will bury my son and tomorrow we will begin to build his legacy, and what he did in life will echo for eternity.”
What is the next step for you, both personally and in terms of your activism?
When Giovanni was struggling for life the first six months of his life I kept a running journal for everyone to read and I ended each entry with “That which does not kill me only makes me stronger” from Nietzsche.
Now I must follow the same philosophy I espoused to give him strength. So I’m going to heal the best I can and build my son’s legacy. My hope is to build a campaign in New England called “Do it for Giovanni, save a life,” and then try and partner with the Italian registry, bringing my son’s legacy back to his ancestors, and save as many lives as possible.