IN NEED: Jordyn Weller’s NDIS case is being reviewed in a bid to help the 12-year-old with Syngap1 syndrome
IN NEED: Jordyn Weller’s NDIS case is being reviewed in a bid to help the 12-year-old with Syngap1 syndrome

‘It’s the only option we have’ Mum’s last resort

HAVING her 12-year-old daughter live under the same roof would be a dream come true for Rockhampton mother Rebecca Weller but with no help from the government the idea is out of reach.

After moving from Emerald to Rockhampton to be closer to help for Jordyn's disability, her parents have had to move Jordyn into part-time care.

"I'm struggling - she's only 12, she shouldn't be living away from home,"  Mrs Weller said.

"At this moment in time it's the only option we have."

The move means Jordyn stays with carers three nights a week.

Jordyn has Syngap1 syndrome, a neurological disorder which causes her to have violent episodes at least twice a day.

During the episodes, which last about 30 minutes, Jordyn spits, hits and yells at people.

At 12, she's grown to the point where her parents struggle to control her.

In a city of about 80,000 people, Mrs Weller presumed there would be help available for Jordyn in Rockhampton but feared it was available only to those in capital cities.

"With Rockhampton sort of being the hub for the Central Queensland area we thought there would be a lot services here because people do come from the west," she said.

"Where we can go from here?"

In the past month Mrs Weller has gained traction for Jordyn's cause by documenting the family's daily challenges on the Jordyn's Syngap Life Facebook page.

Her story has been told by several media organisations and Mrs Weller has approached politicians and organisations for help.

She recently received promising news.

She said when the National Disability Insurance Scheme originally assessed Jordyn, her behavioural issues were not acknowledged.

A NDIA spokesman told The Morning Bulletin: "Jordyn has significant funding in her NDIS plan to ensure she can access necessary disability-related supports".

Mrs Weller said: "We have been told by the National Disability Insurance Agency that because we have behavioural challenges it should've raised flags in the system.

"Jordyn's plan should've been done by a senior plan reviewer.

"We raised the concerns but it wasn't noted by the NDIS how severe the situation was."

As a result Jordyn's case is being reviewed and she could be eligible for more funding.

Mrs Weller said funding for behavioural therapy was good news but helping Jordyn was not as simple as that.

"There is no one registered in the Rockhampton region that can provide the more intense service," she said.

Mrs Weller said Jordyn was needed restricted practices but with no one available in Rockhampton to perform the service, they family was waiting to see whether NDIS would fly in a professional to administer treatment or if they will be left to foot the bill.

"We don't have a clear set goal but we'd like to be able to help her lessen her behaviours and control them a bit better so she can go out and enjoy her life," she said.

Jordyn's aunts have started a Go Fund Me page to help pay for services, and the page has almost raised $10,000.

The first fundraising goal is $15,000 to pay for Jordyn to visit Syngap1 neurologist Ingrid Scheffer in Melbourne from 2020 to 2026 until she turns 18.

Mrs Weller said support from the community helped Jordyn get closer to enjoying the little perks of life people often took for granted.

"Even a simple thing like being in the car with her brother can cause issues," she said.

"Just going to the shops she wants to hit people or yell at babies.

"I used to take her to her brother's football games but I can't do that anymore."

While the Wellers wait to hear from the NDIA, they will continue to give Jordyn the best life they can.

Federal Member for Capricornia and Assistant Minister for Children and Families Michelle Landry said she planned to work with the family to ensure a "favourable outcome".

"I made representation on their behalf to our NDIA parliamentary contact and I ensured that their case was escalated within the department," Ms Landry said.

"I want to do everything I can to help Jordyn and Rebecca and ensure that all communication lines remain open."

The NDIA has confirmed Jordyn's case is being reviewed to ensure she has appropriate funding.



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