"Leave a Piece for Me" — Jess Gaeton on Losing Lucy to SMARD, and Pregnancy After Loss
Jess Gaeton lives in Hamilton, Ontario, with her husband Tyler. Her daughter Lucy was born small at 37 weeks after a pregnancy marked by IUGR, and spent a month in the NICU before coming home. At seven months old, Lucy was diagnosed with SMARD type 1, an extremely rare genetic disease. After a trip to Ohio for an experimental gene therapy trial, Lucy passed away on May 1, 2025, weeks before her first birthday. Jess is now 28 weeks pregnant with a son, conceived through IVF.
We talk about:
Lucy's NICU stay and the slow road to a SMARD type 1 diagnosis
Traveling to Ohio for an experimental gene therapy trial
The night the family decided together to say goodbye
Choosing IVF and genetic testing to grow their family again
What a medium told her about leaving "a piece" of Lucy in the nursery
Being 28 weeks pregnant while still carrying the weight of the second year of grief
This episode is a reminder that grief doesn't get smaller with time, it just becomes something you learn to carry alongside everything else.
Get to Know Jess:
Jess Gaeton lives in Hamilton, Ontario, with her husband Tyler, their dog Freddie, and their cat Dwight. Her daughter Lucy passed away in May 2025 from SMARD type 1, a rare genetic disease, just before her first birthday. Jess is currently pregnant with a son.
