About us

Our son, Nikhil, sadly passed away this year at the young age of 12. He had a rare genetic condition known as Microcephaly-Capillary Malformation Syndrome caused by STAMBP gene mutation. The most debilitating result of this syndrome was the severe form of epilepsy called Lennox-Gastaut Syndrome, among other medical and physical disabilities.

During Nikhil’s 12 years, we navigated our way through many hospitalizations, early intervention, specialized school classrooms, IEP meetings, nursing care, Medicaid waivers, accessible home modifications, and so many other issues that come along with raising a child with such complex needs. We have lived in the Northeast part of the U.S. since Nikhil was born and have lived in three different metropolitan areas over the years. We know how lost, alone and overwhelmed parents can feel and hope this blog can be a resource.