Siblings battle fatal illness

Kelly McElligott with daughter Maggie (Louisa Jones) 208923_06

By Luke Voogt

A fundraiser for two terminally-ill children from Highton has raised more than $74,000 in 24 hours.

By yesterday morning about 700 people had donated to the fundraiser for Maggie and Billy McElligott, who have a rare, fatal illness.

“We certainly had no expectation that it was going to take off like it did,” their mother Kelly told the Independent yesterday.

“We’ve been so, so overwhelmed by people’s generosity.”

In April 2019 the family received the heart-breaking news that their daughter Maggie, 6, had Tay-Sachs disease, Kelly said.

The genetic disorder destroys nerve cells in the brain and spinal cord, causing children to slowly lose their ability to walk and talk, and eventually results in seizures.

“No one normally survives beyond late childhood,” Kelly said.

“There’s no cure.

“Since Maggie’s diagnosis she has lost her ability to talk, toilet independently, eat and now also to walk.

“Recently she has become wheelchair-dependent and she has seizures every day.

“[We are] managing her seizures and getting the best equipment and treatment to make her quality of life as good as possible.”

This February, their son Billy, 5, was also diagnosed with the disease.

Kelly said while Billy’s regression seems slower, his speech and co-ordination has begun to deteriorate.

Their three-year-old sister Alice, who does not have the condition, is already trying to help her older siblings despite their condition being difficult for her to understand.

“She puts toothpaste on Billy’s toothbrush for him and has started helping to feed Maggie, which is beautiful,” Kelly said.

“But probably not something a three-year-old should have to do.”

With Maggie’s condition deteriorating and Billy’s impending decline, the family made the difficult decision to call for help via a GoFundMe campaign on Wednesday.

Geelong donors quickly smashed the page’s $60,000 target for the family to buy a new wheelchair-compatible car.

Kelly described the response as incredible, especially given people’s financial uncertainty amid COVID-19.

Any extra funds would go towards wheelchair ramps at home, equipment and pre-planning the childrens’ funerals, Kelly said.

“It’s sad but that’s the reality – we know our children are going to pass away and we have to do everything we can to prepare emotionally and practically.”

Kelly and husband Rory had no choice but to make the most of each day with their children, she said.

“Alice doesn’t have it and we still have all our beautiful kids for now – some people can’t even have children – so I guess you have to look at it from a positive perspective.”

To donate: www.gofundme.com/f/transport-for-tay-sachs

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