Sarah-Claude lives in Quebec with her husband and three daughters. Her son, Esteban, was diagnosed with Sanfilippo Syndrome, a very rare genetic disorder. Esteban died at the age of 9. We extend our condolences to his family and friends.


Respite care helps the whole family
My advice to other families
Talking about Esteban's illness
Esteban's support dog
Pediatric palliative care helps with big decisions
Pediatric palliative care takes care of the whole family
Taking Esteban into the community
Living with many different griefs
Connecting with other families