Picture: Gary Warrick
ERSKINE Park youngster Aidan Sammut is one tough little tiger.
He has Pearson's syndrome, a rare condition characterised by anaemia and pancreas dysfunction. There are fewer than 100 cases worldwide and not many patients reach their fifth birthday.
The Star met the Sammuts in April 2010 when Aidan, then aged 18 months, had spent most of his life at the Children's Hospital at Westmead. While developmentally delayed and on a feeding machine up to 20 hours a day, Aidan is a happy boy who loves music, going to the park to feed the ducks, TV cooking shows and watching rugby league — especially Wests Tigers.
"The last 12 months have been his best so far," Kylie Sammut said. "He was not expected to live this long.
"We thought we'd lose him last July when his kidneys starting shutting down but since then, he's gone from strength to strength.
"I got an email from his specialist last week, saying she's shocked and can't believe he's still here today. He talks non-stop and loves rugby league religiously. He won't go to bed on Thursday nights until the The Footy Show ends."
The Sammuts don't look too far into the future. "We try to give Aidan the best life we can and take each day as it comes. He wants to live life and doesn't want to stop."
Anthony has bounced back from brain injuries suffered in a car accident almost three years ago, to be Aidan's full-time carer.
And the family hasn't let a recent burglary get in the way of enjoying their time together. They were on a rare break at Bear Cottage on August 16 when thieves broke into their home and helped themselves to jewellery, including a ring from Kylie's great-grandmother and a dragonfly pennant given to her by Anthony after Aidan had been diagnosed.
"I was devastated as we were really looking forward to a break. Aidan was meeting an Olympic bronze medallist when Anthony got the call so it ruined an amazing moment for us. We considered not going to the footy next day but refused to let it ruin our weekend."