Felix’s Story

Felix eight months

Our son Felix Victor was born on November 19, 2014. At two weeks old, he was diagnosed with SCID-ADA (a genetic disorder called Severe Combined Immune Deficiency, due to the absence of the ADA enzyme. You can read more about the condition here). He underwent gene therapy in Los Angeles in July 2015. He is currently still in recovery.

If you have been following Felix’s story and just want to see the most recent updates, head here.

To read his story in order, here it is from the beginning. (Note: It may not be fully updated at all times.)

Felix’s Story (So Far)

Update on Felix (News of his diagnosis and admittance in the hospital)

It Sucks More Than Anything and It’s Amazing (The horror and blessing of Felix’s diagnosis and early treatment)

Felix’s Condition and Treatment (As I first understood it)

Week Four in Hospital: Waiting, Waiting, Waiting

Our Life Right Now (Early Weeks in the Hospital)

Lessons in Grief

Conversations About Felix’s Life and Death (Finding Out About CMV and Nearly Losing Him)

It’s Not All Bad: Our New Reality (Adjusting to Hospital Life)

Unnatural Healing (Grappling with Having a Medically-Fragile Child)

Update on Felix: Down and Then Up Again (A Big Scare)

We’re Going Home!

On Being Home

How Far We’ve Come (Six Months After Diagnosis)

Life at Home in Isolation

Gene Therapy and the Year Ahead

What Is Gene Therapy?

Gene Therapy in LA: Days 1-3 (Flying to Los Angeles, Admittance at UCLA, bone marrow harvest)

Gene Therapy in LA: Days 3-7 (Chemo and transplant; heading home)

First Week Back at Home Hospital

Last Week in Hospital

Home Again

Two Months After Gene Therapy

Three Months After Gene Therapy

Felix is One Year Old!

Five Months After Gene Therapy (The news keeps getting better)