Steve Waugh Foundation helps Sydney girl with rare genetic condition

Marley Tagg was born with a rare inherited condition, so rare, she is the only one in the world with it — and who is getting help from cricket legend Steve Waugh.

When Marley was born, two of her chromosomes swapped parts with each other — meaning she has a genetic condition so rare, she is thought to be the only child in the world like it.

It has meant a lifetime of hurdles but she has two things going for her. The first is her incredible parents — and the second is help from an Australian sporting legend’s charity.

At first Marley could not breathe, then she had a hole in her heart that had to be fixed but perhaps her biggest challenge has been the effect to her intellectual and physical development.

Marley Tagg when she was a baby.

Now 11, she is the size of a seven-year-old. Marley was six before she could walk, and, as she is hearing-impaired and non-verbal, she has slowly learnt to communicate with her parents Simon and Shantelle Tagg via sign language.

She is believed to be the only child in the world with her genetic condition.

Simon and Shantelle Tagg with Marley, 11, who has a rare genetic condition.

“There is no research on her condition but I am the carrier for her condition, I passed it onto her,” Mrs Tagg said.

The Sylvania mum had a 95 per cent chance of passing the condition on to future children, so the couple opted for IVF and genetic selection.

“Of the 12 embryos that were tested only two were unaffected and they are now Kai, nine, and Clio, seven,” she said.

The first three years of Marley’s life were incredibly difficult primarily because her condition meant she did not produce the sleep chemical melatonin.

Marley’s life has been improved with help from the Steve Waugh Foundation which helps children with rare diseases.

“She wouldn’t sleep, but she was so exhausted she would hit her head on the ground, she was distraught because she was so tired,” she said.

“We would lie with her to try get her to sleep but, if we moved, she’d wake up and throw herself on the ground. It was a very distressing time, we basically had three years of no sleep.”

Children with rare diseases are often forgotten according to cricketing legend Steve Waugh who, along with his wife Lynette, set up the Steve Waugh Foundation to help kids like Marley.

“The idea is to help kids who had nowhere else to go because kids with rare diseases don’t have a support network,” Mr Waugh said.

“They are the orphans of the health system,” Mrs Waugh added.

Steve Waugh with Shantelle, Simon and Marley Tagg.

The foundation manages to donate around $1 million in grants each year for bespoke solutions for children like Marley, whose first grant was a special bed to keep her safe.

“It’s a double sized cot and it is fully padded around the sides. She can’t hurt herself and it vibrates to relax her, it just changed our life actually getting sleep, it was amazing,” Mrs Tagg said.

Then her room was soundproofed so the rest of the family could function normally.

The Steve Waugh Foundation has helped Marley communicate.

“She can go to sleep now but she is a very light sleeper so any outside noise would wake her. When Marley went to bed we had to tiptoe around the house, we could not watch television and she’d go to bed at 7.30 and our entire house would go into lockdown. Since having her room soundproofed we have a life, we watch the footy or a movie and do things like a typical family could do.”

And learning how to communicate with her family has been a turning point for everyone.

“Marley is a great signer, she also uses key word sign language and she also has two interactive smart boards the Foundation funded for us and she can make choices on those,” she said.

“It gave her a voice and a way to let us know how she was feeling and what she wanted. Not being able to get across what you need and want is distressing, so opening up her world made her happier.”

“It’s all about making a difference to these kids lives,” Mr Waugh said.

For more information, go to stevewaughfoundation.com.au