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Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Preparing for the Unthinkable

Tay-Sachs, Sandhoff, GM1, Canavan and related diseases

Preparing for end of life and thinking does not mean giving up hope. As the saying goes, hope for the best but prepare for the worst. Things you may want to consider:


When it feels right, think about which funeral home you want to use and consider contacting them in advance to discuss arrangements. Funerals can be costly and you'll be able to think more clearly about providing a beautiful funeral within your budget when not in the immediate shock of losing your child. Consider if you want a private service or one open to friends and family.

You may want to discuss with the funeral home the final bathing and dressing. Consider asking the funeral home to use your child's shampoo and soap so your baby will have that familiar smell. If you notice something is amiss, like chipped nail polish or the hair isn't right, will the home allow you to correct it? Knowing the policy in advance will allow you to make the arrangements that are important to you at home before going to the funeral home.

Ask a trusted family member or friend to be your voice if anything is not as you want. 

Celebration of Life

Some families prefer to think of the funeral service as a celebration of life. Think about what music and readings are meaningful to your child and family. A balloon or butterfly release can be uplifting. Some families write messages and tie them to the balloon strings. Another idea is to ask people to wear bright happy colors, what is your child's favorite color?

Lasting Legacy

Tissue donation is a precious gift that helps to advance meaningful research to find a cure. It is an extremely private and personal decision. Read more on Donating Tissue for Research in the Research section.

Read more about in our pdf Home Care Manual (508 KB)  on page 11.