LESLEY Spark always wanted to do the Island Charity Swim from Mudjimba to Mooloolaba.
But the Kuluin single mother of a severely disabled teenage boy died last September after a heart condition and three battles with breast cancer.
So Mary Taylor, who also has a 16-year-old with cerebral palsy, took to the water yesterday morning in Lesley's honour, swimming out from Mudjimba Beach and around the island as part of a relay team.
She was part of a contingent in the 12th annual swim - an event which has raised more than $1 million for the Nambour and Currimundi special schools.
The event, founded by Daily editor at large Bill Hoffman and columnist Ashley Robinson, attracted crowds as everyone from swimmer Jack Carmine to deputy mayor Chris Thompson and solo sailor Jessica Watson, joined the fundraising efforts.
But it was Mary's tribute to Lesley that touched everyone's hearts.
"She was always there at lunchtime and at the barbecue," Mary said of Lesley's support for the swim.
"One year, we thought we could do it as a team but it didn't work out.
"She kept on saying 'one of these years I am going to do it'."
Mary said Lesley was caring for Jayden when she suddenly passed away.
"I thought: 'she is dead, I'm alive I have to do it'."
"So this is for Lesley."
Lesley's son Jayden has cerebral palsy and is non-verbal.
"He is just like my son (Kenny) but only in a wheelchair."
The two mums talked to each other as they picked up their sons from respite care.
But Mary said it was not until the funeral that she discovered the battles Lesley had faced.
"I did not realise she had had breast cancer three times.
"She had radiation and chemotherapy and she had a dicky heart and that's what she died of.
"But she had the brightest smile and Jayden is just gorgeous.
"She was always fussing over him."
Mary said parents of disabled children continually lived in fear about what would happen to their children when they were gone.
"That's the one thing that is always on your mind... what is going to happen to them when you die?
"Who is going to look after them?"
She said it was time politicians started to listen to the parents of the severely disabled and support a national disability insurance scheme to give parents some certainty.
Mary said the government was always reactive - like throwing $26 million at saving koalas when they were almost extinct - rather than being proactive.
"When we start killing all our kids because we can't handle it any more, maybe they will be reactive."
Last year, Mary and her husband Garry made the heart-breaking decision to temporarily give up their ill son after battling the state for years to gain the help they needed to support him at home.
Dozens of Queensland families have done the same thing.
Ashley Robinson said he had a message for the Premier after finishing the 11km charity swim.
"My message to Campbell Newman is, for God's sake have another look at this National Disability Insurance Scheme.
"There are people here swimming to try to fill a gap for people with disabilities, but it is not enough. The government needs to do something as well."
Bill Hoffman, who has written many stories on families with disabilities, said there was a $6 billion shortfall in funding for families.
He said the funding model had to ensure money went directly to families or those providing care and support, rather than government agencies and monopolies.
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