Sebby was diagnosed with Tay-Sachs disease in December 2017, at seven months old. Sadly, Sebby passed away in March 2019 at 22 months old. Sebby is a sparkly, charismatic treasure who continues to inspire many with his spirit and courage.
Layla was born in August 2019, so my children never got to meet. Needless to say, Sebby’s passing left my husband, Marc Coupar, and I heartbroken.
Through our own experience of diagnosis and living with Tay-Sachs disease, I saw that there was a real gap in support in Australia. Building on my professional experience as a company owner, I was inspired to start Rare Find Foundation in 2019.
A diagnosis of Tay-Sachs or Sandhoff diseases for your child or loved one will likely be one of your most challenging experiences. Rare Find Foundation was created in the hope that it provides you with information, support and reassurance throughout your journey. We hope that the resources we have developed will help you to care for and support your child or loved one, and that you find a level of empowerment and comfort knowing that you are not in this alone.
You are part of a community of families and carers in Australia, and indeed throughout the world, who have been through or are going through a journey similar to yours. While that may be comforting in itself, we are also happy to connect families and carers who wish to strengthen their connection and support.
It is our sincere hope that the resources we have developed help you to make the most of every precious minute with your child or loved one.
Please reach out to the Foundation with any questions or requests for support and assistance. We are no more than a phone call or email away, at any time of the day or night. I refer back to the words I wrote above: Receiving a diagnosis of Tay-Sachs or Sandhoff diseases in your child or loved one may be one of your most challenging experiences. I understand completely. Rare Find Foundation is here to support you through this experience.
Anna Pak Poy