Dante passed away on February 25th, 2017 of what is termed Febrile Illness-Related Epilepsy Syndrome (FIRES), a subset of New Onset Refractory Status Epilepticus (NORSE). FIRES is a rare syndrome, affecting 1 in 1,000,000 children. It’s cause remains a mystery and it’s effects devastating - in 1/3 of cases causing death in children who were previously perfectly healthy.
We continue to raise funds for Roger Neilson House (RNH). Not only is this where Dante passed away, but the RNH has been a constant source of support for our family in our grief journey. Without their support, who knows where we would be!? RNH has helped many families facing the end of life of their child. They also provide a home-away-from-home for children with life-limiting illnesses.
Every little bit counts to help support families like ours! Thanks for your donation!