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.
This year, we are again raising 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!?
We’re running the race for Dante. We’re giving back to RNH. 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.
Let’s add to the $5,100 we raised last year! Every little bit counts. Help us support RNH, help support families like ours!