at home with giovanni guglielmo - post transplant
This post has special meaning for me. Last month I had the opportunity to meet one very special little guy named Giovanni.
I was reading an article published on January 7th, 2007 in the Boston Herald when I first learned about baby Giovanni Guglielmo. Giovanni was born with nemo - an extremely rare chromosomal disorder resulting in a number of lifelong complications. Only about a dozen cases of nemo have ever been diagnosed in the United States.
Giovanni's diagnosis meant one thing - he needed a life saving bone marrow transplant, and fast.
The main complication Giovanni suffered was his deteriorating immune system. His best shot at survival was a life saving bone marrow transplant. With Greek/Italian heritage, finding a match was the toughest part. In the meantime, Giovanni's life was spent at Children's Hospital confined to a crib and protected from outside germs which could kill him.
Either his mom or dad stayed by his side at all times. He never woke up to an un-familiar face.
The family, who is from New Hampshire, made the almost two hour trip to Children's Hospital in Boston several times a week.
Have you seen this boy lately?
Giovanni received more local press last year than most celebrities get. His story became a sensation, especially to readership of the Boston Herald. To the credit of Giovanni's father, this story, and the importance of the bone marrow registry made itself onto the front page more than once.
This is Giovanni's father, Michael Guglielmo.
Years ago, after a run in with the law, Guglielmo found himself locked up. "Prison saved my life" he said. While serving time, Guglielmo took his high school education and turned it into a masters degree. With the help of a few law books, Guglielmo eventually became the in-house attorney, fighting for the rights of fellow inmates. He was even able to get his cases published in several news articles. Using the media to his advantage was something he became very good at. Years later he was doing it all over again - except this time he was fighting for his son.
Guglielmo shaved his head to support his son while undergoing chemotherapy. (His trademark horseshoe was never touched).
Giovanni missed out on a lot of things while stuck in the hospital. He went his first year of life without crawling or sitting up.
His two half brother's continued to go to school while their parents were back and forth to Boston.
Giovanni's father is a contractor. Now committed to his family full time, the business suffered. With debt mounting, the family decided to raffle off their beautiful new home. With tickets at $500 a piece, checks started coming in immediately. What they didn't expect in the mail was a letter from the attorney general, telling them it is against the law to raffle real estate.
Luckily, the donations did not stop pouring in. With all of the media attention paid to Giovanni, strangers opened their hearts, and their wallets. The Guglielmos were able to stay a float, and in their home. A local artist even offered to paint a mural on the ceiling of their family room after the Sistine Chapel, in honor of baby Giovanni.
In March of 2007, a match was found. Not bone marrow, but cord blood. On March 21st, Giovanni received the gift he had been waiting for, a chance at life. The cord blood was transfered into Giovanni's body, and now began the waiting game.
This picture was taken on January 6th, 2008 - 291 days post transplant. The transplant went remarkable.
In honor of Giovanni, Italy held it's first ever bone marrow drive adding 1,000 people to the international registry. The Vatican was impressed. Giovanni received this honorary blessing from Pope Benedict. Once Giovanni's immune system is strong enough, the family hopes to visit Italy.
"When someone complains about their bad day, I tell them to go sit in the lobby of Children's Hospital so they can watch the parents who have to leave without their children" said Guglielmo, referring to the number of children who don't make it.
The Guglielmo's have started a non-profit orginization called, Save Giovanni's Friends, in hoping of doing just that. Bone marrow drives are held each weekend throughout greater New England by Save Giovanni's Friends. They have added over 10,000 people to the registry in just a year. All it takes to join is a simple cotton swab of your mouth.
He hopes to add over a hundred thousand donors to the registry in hopes of saving more children like Giovanni.
While there is no comparison between Giovanni before and after transplant, his struggles are far from over. Giovanni recently underwent testing for ectodermal dysplasia, a condition that interferes with the development of skin, hair, nails, teeth, and sweat glands. Each case of ED is different, and the severity of Giovanni's case is still unknown.
With new ties to DKMS and the Red Cross, Giovanni will continue to be the face of the bone marrow movement.
I contacted the family in hopes of doing this portrait session because I wanted to show the new Giovanni. If you have followed this story from the beginning, you remember the iconic photos taken of sick Giovanni in the hospital. Now that he is at home and doing much better, I wanted to show the flip side. A happy one year old.
Thank you to Michael and Christina for so willingly letting me into your home. We wish you nothing but the best!
Because of the Save Giovanni's Friends drives, nine people have been given a second chance at life. "He's saved nine lives and he doesn't even know it," said his father. Please become a bone marrow donor, each person can truly make a difference.
For a list of up-coming drives in the New England area, please visit Save Giovanni's Friends
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