Our superhero Luciano took his first breath August 28, 2015 and within the first few months of life started having multiple infantile spasms every day and struggled to drink from his bottle. Soon it became clear that he was showing significant developmental delays.
In August 2016, after genetic testing and research by his neurology team, Luciano was diagnosed with a rare gene mutation in the WWOX gene.
It was also confirmed that this was the same disease his oldest brother Santino suffered from. Santino passed away in 2005 after a short but heroic life here on earth at 19 months old.
Sadly, our superhero Luciano also took his last breath on February 2, 2019. Our middle child, Vincent, is a healthy young boy who adored his brothers and was a great help with Luciano through his journey.
Luciano and Vincent
Luciano continued to battle intractable epilepsy throughout his life and suffered from many secondary health issues which came along with his diagnosis. Luciano was fed through a gastrostomy for 22 hours a day on the ketogenic diet in an effort to control his seizures. His days were filled with medications, round the clock nursing, hospice care and physio and occupational therapies. Over time his therapies grew to include respiratory treatments, continuous oxygen, beeping pulse ox monitors, Chest PT treatments (aka “Shake ‘n Bake") and cough assist treatments.
Luciano's immune system was compromised, and weather changes effected his respiratory system, making it difficult to breath and manage his secretions. By default, Luciano stayed home most days to keep him as healthy as possible. However, contrary to what most would think, being at home did not prevent Luciano from still living his life to the fullest!
Luciano enjoyed listening to his dad’s music, dancing in his Standing Frame with his nurses, having his own Nascar races through the house in his wheelchair, finger-painting, carving pumpkins, dressing up (or being dressed-up), posing for many, many photos, reading books, and his absolute favourite - swimming in the pool and relaxing in the hot tub with his nurses and his family
He celebrated BIG with his family and friends for each victory, nothing was too small to celebrate (and with firework shows, no less!). There was never a dull moment with Luciano!
As we along with his nurses cared for him, in the end, it was Luciano who was caring for all of us. He taught us all what it means to fight, and what it means to trust and have hope in all situations, his timing was always perfect for any situation... both good and bad... so that the right people were there at just the right times to handle his care and needs.
He had a way of reassuring everyone who loved him that no matter what, no matter where he is, he would be just fine.
We never wanted pity for the double lottery we won with WWOX. We wanted the world, near and far, to see how strong Luciano was and for others to be inspired by him. Having the heart of a warrior, Luciano overcome many obstacles with the love and support of his family and medical team. We spent time praising the little accomplishments in life such as chewing on his fingers and the frequent little smiles that he gave us. Our son was a true fighter. We are beyond grateful for every day we had with Luciano, as we always knew all too well that another day with him was never guaranteed.
We want to say thank you to our friends and family who have been by our side. We love you and appreciate you more than you’ll ever know.
Having a child with special needs was tough, but it was also one of the most beautiful experiences in the world. It’s safe to say that Luciano taught us to fight like the superhero he was and to never let anything bring us down.