P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

Quality of Life and Advanced Care Planning


Respite/Caregiver Support

Family support and respite for children and youth with special needs | ontario.ca

Goals of Care Discussions


Supportive Teams for Advanced Care/Difficult Life Stages

Children Hospital of Eastern Ontario

Advance Care Planning/End of Life/Aftercare

The information provided in this package is for your reference. The intent is to assist you and your family during a
difficult time with options for end-of-life care, resources and supports should you be facing an anticipatory/unexpected death of a loved one with Rett Syndrome



Canadian Mental Health Association: To find your local program go to ontario.cmha.ca; Website also provides literature to provide to families. 

Bereaved Families of Ontario: bereavedfamilies.net 

centerforloss.com – another good resource for helping families who are mourning 

afterloss.com – an excellent monthly newsletter for those wishing help at home 

fernside.org – a club for kids and teens dealing with death 

griefwords.com/index.cgi?action=page&page=articles%2Fmourners.html&site_id=5 –Mourner’s Bill of Rights, Alan D. Wolfelt 

centerforloss.com/who-are-you/someone-i-love-has-died/ – The Mourner’s Six “Reconciliation Needs”, Alan D. Wolfelt 





Book: It’s OK That You’re NOT OK: Meeting Grief and Loss in a Culture That Doesn’t Understand, by Megan Devine