Sebby’s legacy lives on as mum fights to help others: Rare Find Foundation celebrates $25k grant

Adelaide mum Anna Pak Poy has lived the heartbreaking reality of losing a young child to a rare and incurable disease. She’ll use a $25,000 grant to help other families who face a horror diagnosis.

Anna Pak Poy with daughter Layla 11 months and a picture of her beloved son Sebby, who sadly passed away last year. Picture Matt Turner

An Adelaide-based charity – the only of its kind in Australia – has received funding to help it reach out to parents of children with rare and incurable diseases.

The Hospital Research Foundation (THRF) has pledged $25,000 in support of the Rare Find Foundation which aims to help care for the families of children given the devastating diagnosis of Tay-Sachs or Sandhoff disease.

The foundation was set up by Bowden mum Anna Pak Poy, after she and her husband Marc Coupar were left heartbroken by the death of their first-born child, Sebby.

The 22-month-old tot died in March last year, 15 months after being diagnosed with the rare neurological genetic disorder, Tay-Sachs.

He never got to meet his little sister Layla, who is now 11 months old.

“There are no words to describe the pain and heartbreak of knowing that your child is facing a life-limiting condition with no cure,” Ms Pak Poy said.

We love you Sebby: Mum Anna Pak Poy and little sister Layla, aged 11 months, who Sebby didn’t get to meet after dying from a rare disease. Picture Matt Turner.

The new funding will be used to produce online and hard copy information resources to support the unlucky one in 180,000 Australian families who face the devastating diagnosis.

“The lack of crucial information and support leaves families who are faced with the most traumatic event imaginable feeling isolated and ill equipped,” Ms Pak Poy said.

“We are incredibly grateful for THRF’s support, arming us with the funds we need to rapidly develop this essential resource.

“It will have a tremendous impact on those affected by Tay-Sachs and Sandhoff diseases in Australia, as well as those in the broader rare disease community.”

THRF CEO Paul Flynn said his organisation, committed to supporting life-changing medical research and improved healthcare, was proud to be able to help in some way.

“We believe everyone deserves someone fighting for their health,” Mr Flynn said.

“Access to disease information, particularly when the diagnosis is so heartbreaking, is a basic yet essential healthcare service.”

To support THRF, visit: www.hospitalresearch.com.au/donate