Welcome! 

Thank you for subscribing to Elliot’s blog and for all the generous contributions in honor of Elliot. We are so delighted to have such a wide circle of support already! 

 Since Elliot’s diagnosis with Congenital Nephrotic Syndrome of the Finnish type we’ve known that the only long-term treatment is a kidney transplant. Elliot was born preterm in October 2014 and was diagnosed close to his original due date. He was hospitalized over 200 nights in his first year of life. The aggressive interventions of this time (infusions, removal of one kidney, and other interventions) paid off. Since July 2015, we’ve been in what people in the CNS community call the “honeymoon phase.” What this means is that his kidney function is low enough that it is no longer leaking albumin, but high enough that it is keeping Elliot stable. At this point, Elliot is inching closer and closer to renal failure (his function is currently at 11-12%). When that happens, he will need to start dialysis and preparations for a kidney transplant. 

Elliot started kindergarten this year. Like many other kids he’s been attending school virtually during the pandemic. He’s looking forward to being in first grade and, at some point, meeting his classmates in person! 

 We have a long journey ahead of us and having your support and presence with us means a lot. We are so excited to have you be a part of our journey. 

We will be posting Elliot’s updates and information about upcoming events and fundraisers here. Please stay tuned!