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

Quality of Life and Advanced Care Planning

Respite/Caregiver Support


Goals of Care Discussions

https://publications.aap.org/pediatrics/article/145/3/e20192241/36889/Toward-an-Understanding-of-Advance-Care-Planning


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 

speakupontario.ca/resources-for-individuals-and-families/ 

grievingchildrenlighthouse.org  

ourageousparentsnetwork.org/topics/end-of-life-and-bereavement 

complexchild.org/ 

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

https://www.amazon.ca/Its-That-Youre-Not-Understand/dp/1622039076

https://www.chapters.indigo.ca/en-ca/books/its-ok-that-you-re/9781622039074-item.html