Learning that your child has a life-limiting illness can be devastating. After learning the typical prognosis for the disease, it is not unusual to worry about the future and anticipate what’s to come. But with a slowly regressing illness, there is a lot of time to understand what you will need medically and emotionally. There will be time to connect with others and gain support; there will be time to explore treatment methods.
Parenting Children with Life Limiting Illness
This toolkit is based on a educational video National Tay-Sachs & Allied Diseases Association put together. To order this video, please go to: https://www.ntsad.org/index.php/infantile-a-juvenile-support/parenting-children-with-life-limiting-illness.