Uncertain future: Lack of services tears family apart
WATCHING her 12-year-old daughter aggressively headbutt the dash of the car is a sight Rockhampton mother Rebecca Weller just deals with.
Her only option is to give up her parental rights.
Jordyn has Syngap syndrome, an intellectual disability, which causes her to have at least two violent episodes a day.
The episodes last about 30 minutes and are triggered by everyday sights, sounds and people.
Fending off punches, bites and scratches is common practice for Mrs Weller but since Jordyn turned 10 the intensity and frequency of her episodes has increased to an almost unmanageable level.
"The bigger and stronger she gets the harder it is to keep her safe, as well as ourselves," Mrs Weller said.
"Our future is uncertain and we are quite scared of what may come because we don't feel like there are a lot of options."
The family moved from Emerald to Rockhampton in 2018 to be closer to services but they feel more isolated than ever before.
"It feels like we have failed her," Mrs Weller said.
Mrs Weller said Jordyn was one of the first five people to be diagnosed in Australia - her episodes are so severe support care workers have refused to visit her.
"We are burnt out - we are emotionally, physically and mentally exhausted because we are doing it on our own," she said.
Jordyn sees a paediatrician and psychologist regularly but is in need of specialist treatment, which has a waiting list of 18 months.
"We are in a limbo and it feels like we have no where to go," she said.
The family can receive money from the National Disability Insurance Scheme but wait times and their regional location prevents them from using the funding.
"The gaps between the different health services and the lack of experience and intense therapy health services in Rockhampton are unacceptable," she said.
"We need enough services and people who can provide support."
Police and paramedics are regularly called to calm Jordyn but during one of her worst episodes she was taken to hospital and sedated.
The moment was a turning point for Mrs Weller, after trialling Jordyn on 14 medications and with no solution in sight, she will be putting her daughter into part time care.
"We can't give her what she needs. It's quite heartbreaking and I feel a lot of guilt about having to make the decision," she said.
Mrs Weller has started the Facebook page Jordyn's Syngap Life to create more awareness for the condition in hope of creating change for all affected by Syngap.
While they wait for Jordyn's turn on the specialist's waiting list, her family have started a GoFundMe Page in a bid to find their own solution.
They hope to raise enough money to fund a yearly visit to a specialist neurologist in Melbourne, get an assistance dog and to receive regular in home care from a behavioural therapist.