Caring for your child or loved one

A note from Anna

Being a carer for someone diagnosed with Tay-Sachs or Sandhoff disease will be both a rewarding and demanding experience.

As the disease progresses, your child or loved one will develop complex needs that can change rapidly. Practical solutions play an important role in helping your child or loved one live their best life.

It is important that you feel comfortable and confident in providing care, and this section contains some suggestions I hope you may find valuable.

Below, you will also find information on facilitating your child or loved one’s mobility, feeding, communication and play.

It is important to remember that every child and family is different. Your care and support team will be able to provide advice on caring for your child or loved one that is tailored to their specific needs, and to your unique circumstances.

Anna Pak Poy

Poppy lying on a rug and laughing

Every day we feel so blessed and grateful for our little girl, and all the joy and happiness she brings into everyone’s life. The hospital admissions, the appointments, the medications, every little thing we do for Poppy is just normal for us. We don’t really know any different. We couldn’t love her any more than we do.

– Sharni, Poppy’s Mum