Every family’s journey with TBCK syndrome follows its own path, but there are often common experiences along the way. When the Cuisamano Family’s daughter, Sophia was born in 2015 and later received a diagnosis of TBCK syndrome they didn’t know what life had in store for them. Motivated by their love of their daughter to stay strong in more difficult times facing such an unpredictable disease and epilepsy, Krystal, Sophia’s mother shares the importance in taking things day by day and not trying to figure it out all at once. Everyone finds their way at a different pace. Connecting with other TBCK families has had such a positive impact on The Cuisamano Family, particularly connecting with TBCK foundation Puerto Rico, which hosts in-person meet-ups for families diagnosed with TBCK syndrome. Krystal has been an engaged asset in our TBCK community, providing translation support for Spanish-speakers for The TBCK Foundation. Connection is such a vital source of support for families and like the Cuisamano Family, an essential part of the journey for a TBCK diagnosis. (Sophia is 8 years old and lives with her family in Puerto Rico.)