Help change the future for children like Tae

Maddie's Vision needs your help to fund new research into Bone Marrow Failure Syndromes and provide patients and families with vital services.  

We need your support to change the future for other children, just like Tae.

Tae was sick since he was born. His loving parents, Seol and Greg, took him to countless doctors trying to find out what was wrong. When he was a baby, he was diagnosed with neutropenia, and at the age of four, he was diagnosed with autism. Life wasn’t easy, but Tae’s remarkable personality and ability to bring joy to everyone around him helped his family.

Heartbreakingly, in 2017, Greg received terrifying news - he had Gastric Cancer. He fought bravely for almost two years, and sadly passed away in 2019. With the entire family overseas, Seol was left to raise Tae, and his sister Lea, alone. 

In April 2022, Tae got an infection on his leg that just did not get better. Seol knew something was very wrong. After rushing him to the Royal Children's Hospital and multiple tests, including a genetic testing trial funded by Maddie’s Vision, he was diagnosed with Shwachman Diamond Syndrome – an inherited Bone Marrow Failure Syndrome.

During treatment, Tae’s mother Seol felt lost, confused, and isolated. Seol was referred to the Maddie’s Vision Telehealth Nurse Service and she reached out when she needed it the most:

“She was so amazing and approachable. Knowing she was only ever a phone call away made such a difference.”

In September 2022, Tae had a bone marrow transplant. Then in early 2023 he was able to go back to school - he was so overjoyed and excited to see all his friends again.

Sadly, Tae only went back for two days.

He was again rushed to the hospital as he was incredibly sick. He endured multiple tests, then it was confirmed – Tae had relapsed and needed a second transplant.

This time, he didn’t respond well. Whilst the doctors did everything they could, Tae began to slowly die. Tae’s clinical team laid awake at night trying to think of other ways to save him. Devastatingly, they could not. Tae was able to hang on to say goodbye to all who knew him and adored him.  On the 3 November 2023, Tae’s beautiful soul left this world. He was only 11.

Maddie’s Vision established the Australian first Centre of Research Excellence in Bone Marrow Biology (CRE). There are currently seven members of our CRE collaborating on an innovative research project to develop cutting-edge gene editing technologies that hope to prevent children and young adults from dying of inherited bone marrow failure syndromes.

When sharing this cutting edge research with Seol, she said:

“Research is so important and we must continue funding innovative work like this. There is so much more to learn and understand, but with your support we can change the future for other children just like Tae, and help save lives.”

Read the full story about Tae and his incredible family here.

There is so much more work to be done, and we need your help to do it. Please, help Maddie’s Vision by making a generous donation this tax time.

From left to right: Seol, Fiona Riewoldt, Maddie's Vision Teleheath nurse Mei Ling, Joe Riewoldt, Tae, and Lea. 

How you've helped us make a difference

Since 2015, Maddie's Vision has made an extraordinary impact in Bone Marrow Failure Syndrome research and support for patients and families.

36 cutting-edge esearch projects funded

Over 100 patients supported through our national Telehealth Nurse service

$8.8 million committed to research, with an additional $23.3 million further raised by our grantees and fellows through leveraged funding

2 clincial trials, resulting in faster diagnosis for patients and access to more holistic treatment and care.