RaiseUp for Roman

Dear Family and Friends,
Our hero Roman is now 22 months old. As many of you know, Roman has a rare genetic epilepsy disorder known as KCNT1. KCNT1 is a life-long diagnosis accompanied by a catastrophic form of epilepsy, MPSI (migrating partial seizures of infancy) that causes severe developmental and musculoskeletal delays. There is currently no known cure or treatment for this condition, though we remain hopeful we will see Roman's smile return one day.
The nature of this disease is cruel. There are no words to describe the pain our family endures, Roman's daily struggles, and the frustration of a disease with no treatment or awareness. Roman's condition is ever-changing and complex. He is often admitted to the hospital secondary to complications and his amazing mother/advocate, Michelle, is often taking unpaid time off to be by his side.
As Roman grows, his needs are constantly changing. He needs adaptive equipment to help him sit, stand, hold his head up, as well as physical, occupational, and speech therapy.
We would like to get Roman an adaptive support stroller and also a chair, the P Pod (not covered by insurance) that would be very beneficial to him.
If fitting, we are asking for donations towards ongoing medical bills and equipment needs to help Roman and also his super-human mom, Michelle and her family.
We are extremely grateful for your continued support and ask that you continue to send Roman and his family prayers and positive vibes.
Please share our story and thank you all from the bottom of our hearts,
The Luchetti/Hunt Family