Meet the face
behind the posts

My name is Emeline De Souza, I am 32, living in New Jersey raising two incredible children with the love of my life. I was born and raised in New Jersey , we are surrounded by a big family here.

Being a mother was always a dream of mine. I am now the mother of Giuliana (8..almost 9) and John Ryan (2). They are a fruit of a beautiful love story that my husband and I were lucky enough to dream up.

My husband was diagnosed with a Brain Arteriovenous malformation. As a result he had many cluster headaches requiring me to put on my nurse suit since the beginning of our relationship. After he did a Cyber-Knife procedure for his AVM he started having many seizures and the road to rehabilitation from that was a long and hard one.

Ever since my husband diagnosis, I became a passionate learner of the human brain and psychology. Dealing day in and out with my husbands seizures while carrying for an infant (Giulianna at the time) was one of my greatest challenges. 

The balancing act of a mother really came into play. We were in the hospital day in and out. We called the hospital our second home. We spent endless hours of waiting for activity to show up in Joao's EEG. Giulianna practically grew up at the hospital. We played in the waiting rooms and took long breaks at the downstairs cafeteria while waiting for daddy to be cared for. 

Every seizure episode was scary for us until it wasn't. Humans have an incredible ability to adapt to their environment and our goal was just to normalize that which was our "new" life.

Joao now can control his seizures via medication and we have come a long way. We know there is still a long road ahead for him to recover but he is going to strong and is one of my biggest inspiration.

In 2021, our son, John Ryan, was born and we could have never imagined the journey that was ahead for us. John Ryan has GATAD2B a development disorder. I have become a passionate advocate and biggest supporter and as we have before our family will walk through this special journey with our heads held high and stronger than ever.