Infantile & Juvenile Support
- Last Updated: Wednesday, 29 April 2015 13:42
Caring for a child with
Tay-Sachs, Sandhoff, GM1 or Canavan Disease
Tay-Sachs, Sandhoff, GM1 and Canavan diseases are known as progressive neurological genetic disorders. They have common symptoms and approaches for managing day-to-day life. The information in this family support section applies to all 4 of these diseases unless otherwise noted. For details on the disease symptoms and causes, visit The Diseases
Improving the quality of day-to-day life
Learn about the many ways to manage symptoms, making a positive impact on the quality of day-to-day life. The materials in this section describe various symptom management techniques, where to find help, and how to cope.
Advice for getting organized, finding the right doctor, and learning about resources available to you.
Understand how symptoms change over time. The more you know, the more comfort you can provide.
Read about feeding and nutrition, seizures, respiritory health, and sensory stimulation
Practical advise on using strollers, wheelchairs and other equipment.
There are specialists out there. Learn how others may help your family and how to make the most of their services.
The focus of these organizations is on life and living, with the goal to improve the quality of life for the child and the family.
Tips and ideas for day-to-day activities, including meals, support for siblings, and respite care for family members.
And through it all, you need to take care of yourself and your child's siblings.
When you want to help, but are not quite sure how or what to give.
Suggested readings on understanding grief, healing, and remembering.
Planning for the end stages of the disease.