Tilly Elson and her parents Tiffany and Peter.
Tilly Elson and her parents Tiffany and Peter. Jacob Carson

'It's eating away at her' The fight to help Tilly

THE past year has been one of unimaginable pain and grief for the parents and siblings of five-year-old Tilly Elson, who suffers daily from a severe form of epilepsy.

But despite setbacks that would send most reeling, this Gympie family is remaining resilient in the face of hardship.

"She was walking up until January or February this year," Tilly's mother Tiffany said.

"We did a number of stints at Lady Cilento Hospital, where she was walking with help but she's just regressed further."

Tilly is now confined to a wheelchair, with constant monitoring of her oxygen flow and a myriad of medications that must be administered to her constantly.

It's only the latest in a series of health setbacks for Tilly and her family, ever since she was a baby.

"There was a developmental delay since she was one-year-old, she wasn't able to sit up on her own which is when we first had tests done," Tiffany said.

"She has never been able to talk but she had ways of communicating, she would show you something and you'd know what she meant.

"She was always happy and smiling, the epilepsy over time has just eaten away at her - you can't even get a smile out of her any more."

 

Tilly Elson and her parents Tiffany and Peter.
Tilly Elson and her parents Tiffany and Peter. Jacob Carson

Tilly's worsening condition has baffled medical professionals, with the chief neurologist at Lady Cilento having difficulties discerning where seizures start and finish, due to constant activity with her brain.

Despite being on five separate medications for epilepsy, there appears to be little effect in slowing the onslaught down.

"We're looking at, depending on what the doctors say, getting a vagus nerve stimulator - like a little pacemaker that sends signals up her nerve," Tiffany said.

"Because we haven't had success with medications, it slims the chance of the stimulator having any major impact as well though."

There's also the issue of cataracts in her eyes that appear to be growing - while her vision remains intact, it may not if they're allowed to increase in size.

Beyond the intense emotional stress Tilly's health has placed on the Elson family, there's also mounting financial pressure.

 

Tilly Elson and her parents Tiffany and Peter.
Tilly Elson and her parents Tiffany and Peter. Jacob Carson

"Eighteen months ago we bought a D-Max, it was going to be our family car, and we were told by our paediatrician to space out the visits to 12 months because she was doing so well," Tiffany said.

"Now we're being told that this could be it, this could be her from now on.

"We recently had a meeting with a palliative care team, and we talked about a plan to see how far we would want to go to saver her life - that's not them saying that she's done, but she's so fragile."

A new car has been found, one that would better cater to the family's needs and allow them to move Tilly far easier.

After all, as a rapidly-growing young girl, the difficulty of moving her will only increase as well.

The need to switch cars has left them with tens of thousands to pay-off in loans and debt.

The near-constant attention and care Tilly needs has meant Tiffany has given up work, while husband Peter puts in long hours.

"The longest she's ever gone in the past six-seven months has been eighty hours without a seizure - on a bad day it's up to eight seizures a day," Tiffany said.

Help from family, friends and the community has gone an incredibly long way in assisting them with the transition, but high costs of equipment continue to be a burden.

"Disability Support Queensland have been amazing, they fought hard for this chair that can be locked into the new car - it still cost $7,500."

Bathroom renovations have been done for free, and there are tentative plans for a hoist system to allow Tiffany and Peter to bathe her easily.

For the time being though, the vehicle is the priority in order to get Tilly to and from hospital - and the Elsons are now seeking the public's help.

A GoFundMe page to assist with making these payments has been started, you can find it here.

"I don't expect a free car I don't expect anything, I think more than anything else, we just want people to be aware of these issues and how unpredictable life can be," Tiffany said.

"Don't take anything for granted, because you can never know what could happen tomorrow."

Gympie Times


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