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.
