Our son Felix was born in November 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.
His health has fully recovered, however he still struggles with other challenges as a result of his difficult first year.
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)
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)
How Far We’ve Come (Six Months After Diagnosis)
Gene Therapy and the Year Ahead
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
Three Months After Gene Therapy
Five Months After Gene Therapy (The news keeps getting better)
Felix’s Miracles (Or: To God Be the Glory)
6 Months After Gene Therapy (No more IV meds!)
8 Months After Gene Therapy (No more IVIG infusions!)
Ten Months After Gene Therapy (No more central line! No more isolation!!)
Happy Life Day, Felix! (Celebrating one year after gene therapy)
