“Rare Mamas is a glimpse into perhaps the “not so rare” world of parenting a child with medical complexity or special needs. Though we are not a group in volume or numbers, our stories are. Nikki’s own story really resonates with all the conversations I wish that I could have had with other caregivers early on in my journey with our daughter’s diagnosis. Whether it would have changed the course of anything, I won’t know, but feeling less alone would have been a game-changer.”

Colleen Gagnon RN, BSN, CNRN, Clinical Nurse Coordinator Epilepsy and Neurology at Boston Children’s Hospital, Mama to Niamh, Rare Daughter with DCX Band Heterotopia