Drive For Show - Putt for Nico

The 1st Annual Drive for Show - Putt for Nico golf outing was a success! We are extremely grateful for the outpouring of love and support. The donation link is still active. Thank you for your continued support!

Nico Salvatore Ruby was born on March 25, 2020 to Dominic and Monica Ruby. Despite a healthy pregnancy and passing all newborn screenings, Nico stopped breathing on his third day of life and spent the next 29.5 days battling seizures in the NICU. After completing a genetic epilepsy panel, it was found that Nico was born with a very rare, catastrophic and terminal epilepsy syndrome called Malignant Migrating Partial Seizures of Infancy (aka MMPSI) as a result of the KCNT1 gene mutation which is unique to him. Nico is one in 3.6 million literally - only 200 cases have been identified worldwide. There is currently no cure for KCNT1-related epilepsy. At best, there are resources available to help manage the condition and treat the various symptoms. At six months old, Nico was experiencing up to 160 seizures a day. He has made considerable progress since then with the help of many medications, CBD and the Keto diet - now averaging 1-2 seizures daily. He is also in many therapies to help give him the best chance of a comfortable life as possible - vision, speech, occupational and physical. Nico radiates joy and light - he is adored by many and surrounded by love every single day.


Our Mission - The Nico Ruby Foundation is a 501(C)3 not for profit organization created to provide hope through research and awareness, to those living with KCNT1.