When Your Child Gets a Life-Changing Diagnosis: Finding Hope Through Grief

What happens when the future you imagined for your child suddenly changes? How do you hold onto hope while grieving what may be lost?

Author and mother Angela Ricketts shares how her son’s diagnosis with choroideremia, a rare inherited retinal disease that causes progressive vision loss, transformed her parenting, marriage, faith, and understanding of resilience.

In this deeply personal conversation on Family Dialogues with Dr. Burke, Angela takes us from the moment doctors discovered something was wrong with her five-year-old son’s eyes to the realities of raising a teenager who is gradually losing his sight. She shares why parents need permission to grieve after a child’s diagnosis, why isolation can make an already difficult journey harder, and how finding community helped her family move forward without denying their pain.

Angela and Dr. Burke also explore parenting a child with a chronic illness or disability, caregiver grief, sibling empathy, maintaining a marriage under medical stress, faith, resilience, and finding hope after an unexpected diagnosis. Angela explains how she and her husband learned to become vulnerable with each other, reconnect as a couple, and “fall apart together” rather than carrying their grief alone.

Her experience eventually inspired Never Lose Sight and Sight Stones, a nonprofit supporting research into rare retinal diseases; a reminder that grief and gratitude, pain and purpose, can exist at the same time.