Palliative and end-of-life care

A note from Anna

As Tay-Sachs and Sandhoff diseases are life-limiting, it is likely that your child or loved one will receive a referral to palliative care early on in their diagnostic journey. It may even be made at the same time you receive your diagnosis. This is undoubtedly so confronting.

However, it is also worth stating that my family found early involvement with the palliative care team wonderfully supportive and comforting. The palliative care model is built on continuity. This meant that, over time, strong and meaningful relationships developed between our palliative care team, our son Sebby, and my husband and I.

As a consequence of engaging with the palliative care team, Sebby’s quality of life was far greater than it would have been otherwise. Well delivered palliative care really is quality-of-life care.

This section introduces the essentials to help you understand how palliative care can support your child or loved one and your family. It also touches on the difficult topic of the passing of your child or loved one. In doing so, my hope is that you are empowered to seek the support you need when the time comes for you to experience this most heartbreaking and challenging moment.

I also want to take this opportunity to remind you that you do not need to be alone in this experience. Please do not hesitate to reach out to Rare Find Foundation for support and assistance. Even just a conversation can make a huge difference.

Anna Pak Poy