Honor Marco's Life and Support His Family

Marco had been struggling with ALS for the past 9 years. Two weeks ago, he developed respiratory problems and was rushed to the hospital with severe pneumonia and went directly to the ICU. Eventually, he was transferred to the respiratory unit. After multiple rounds of antibiotics and steroids, he seemed to be on the mend. Just as we were planning to bring him home, they found that air was present in his abdominal cavity, he took a turn for the worse. Marco passed away peacefully during a snowy afternoon on December 20, 2024.

Since initial diagnosis at 13 years old, we have had to witness his inevitable decline. His voice went first, due to a tracheostomy and needing to breathe with the help of a ventilator. Over the next four years, we watched him gradually weaken until he completely lost the use of his limbs. For a while, we would chat via text messages. One day, his thoughts went silent. We tried our best to accommodate his needs using his eye movements to answer yes or no questions, but eventually, his eyes stopped moving altogether leaving him no longer able to communicate. Marco went totally quiet.

Marco was a good-hearted boy. A good friend and loyal companion who was always ready to help. He was no longer a child and looking forward to growing up into a fine young man. Life had other plans. He was confined to his bed, unable to move, for the rest of his short and difficult life. He counted on others to help him with even the simplest tasks. I can’t begin to imagine the frustration and pain of having to live inside a body that doesn’t work. His thoughts were eventually silenced by this terrible disease.

We have had our challenges caring for Marco. It was important for us to keep him home and provide the best care possible. We were fortunate enough to keep him out of hospitals for most of his life after diagnosis. It took a huge amount of time and attention to ensure Marco had everything he needed to keep him comfortable, healthy, and at home.

During this time, my wife was unable to work. Marco’s needs required her constant attention. She spent her days communicating with insurance, medical equipment, and supply companies, as well as managing nurses and therapists to help her look after him. His care became her full-time occupation. It hasn’t been easy. We didn’t always have nurses to fill shifts, so we took on his care together when no nurse was available. Insurance wouldn’t always approve some of his medications, equipment, or supplies. I won’t go into too much detail, but I will say that through persistence and determination, we were able to get them to deliver on some of those needs. We would have to purchase what wasn’t provided.

We are asking you to help us fund a memorial for Marco as well as defray some of the costs of his care. It’s been a long road, and we’ve spent so much time and huge resources over the course of these past 9 years. We would be extremely grateful for any support you can provide.

Thank you,

The Ziccardis