- P
On Sunday, July 14th, Blake came down with pneumonia which caused a series of severe seizures which has taken him down a new road in his journey of living life with Sanfilippo syndrome. As a family, with the support and guidance of Blake’s amazing doctors, we have decided to listen to Blake’s body and move him to the hospice phase of care.
We have been in Jamestown, ND with Blake at the Anne Carlsen Center, which has been his second home and second family for 6 years, so that Blake can make his transition into the next life in his most comfortable space surrounded by all the family he has collected throughout his short but beautiful life.
Life has changed in a moment’s notice, and our entire world has become Blake’s every breath. This tender time of transition has left us in the position to put life completely on pause for as long as is necessary to be present and focused on Blake while he makes his journey home as peacefully and lovingly as possible. Our life as a family has stopped in time. Life has been minute by minute for 5 days. But the world outside has not stopped.
It is with great humility that we ask for help in this moment. We have been making this work the best we can, but I just started a new job the week prior to Blake’s turn in health, so we are currently between insurance coverage and pay cycles. We are away from home and living out of convenience stores and fast food restaurants, and only God and Blake know when that will change.
We appreciate your support, your thoughts, your prayers, and your love during this devastating time.