On May 1, 2025, Adam and MckaeLynn welcomed Luca John Francis Giannotti into the world. From the beginning Luca was displaying signs of distress. He was immediately transferred to Mass General Hospital. Luca had low tone from the onset. He underwent extensive testing to rule out various conditions. During this testing period, it became apparent that Luca was having difficulty breathing and feeding, The doctors started him on nasal air and inserted a feeding tube. A genetic team was brought in, and testing was performed. The result is that Luca has a genetic disorder called “TPM2” . This is a gene that makes protein. Basically put, Luca is lacking protein in his DNA which affects all the muscles in his body. It is very rare and only 7 people in the world have been diagnosed with this disorder. Luca was transferred to Children’s Hospital on June 4 , 2025 for further treatment. In addition to this genetic disorder, Luca has been diagnosed with restrictive lung disease. He underwent surgery last week for a G-Tube and he now requires a Bipap machine for his breathing. Adam and Mckaelynn had moved to Connecticut prior to Luca’s birth and since have been staying at various hotels in order to be close to the hospital. They are now faced with moving from Connecticut back to Massachusetts to be close. Luca is going to need extensive outpatient care once he has been discharged. Due to the constant medical care that Luca will need throughout his life, Adam and Mckaelynn are now moving from Connecticut to be closer to Children’s. Due to the rarity of this condition, no one is sure if he will be able to sit up or even walk. The care for Luca’s treatment to date and the ongoing treatment he will need are mounting even with insurance in place. Special car seats will need to be purchased in order for his head to be held in place as well as other special equipment he will need.

We have watched our children struggle both emotionally and physically with the enormity of their situation. Many folks have reached out and asked what they can do to help, so we decided to post this request. They really need to focus on Luca’s medical condition and how to take care of him once he is discharges and we are hoping this fund can relieve some of their pressures.