Casey Lewis was diagnosed with Ehlers Danlos Syndrome after a lifetime of aches and pains which grew worse after her two pregnancies. The syndrome describes a condition where the body doesn't produce enough collagen, the building block of every system in the body.

In Casey's case it affects her cardiorespiratory and gastrointestinal systems, her joints and even her brain. Craniocervical instability means she is in constant pain and is in danger of internal decapitation.

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It's a genetic condition and Casey was the first in her family to be diagnosed, although now looking back it's clear what caused the multiple dislocations and dysautonomia in her grandmother and mother.

As the condition is caused by a dominant genetic trait Casey has also passed it onto daughter Macayla, now 14, and Cobi who's 11.

"But I've also passed on my fantastic sense of humour, not just the dodgy joints," Casey laughed.

In anticipation of being able to afford the deposit for the surgery - which Medicare and medical insurance won't cover as it's considered experimental - Casey was all booked in and prepped to undertake the fusion at Macquarie University Hospital on May 11.

The surgery will see her spine fused from her skull to her C4 vertebrae.

That has now been delayed after Macayla suffered a dislocation and needs to undergo scoliosis surgery. Cobi had his first neurosurgery last November but hopefully won't need more anytime soon.

Delaying her own surgery is disappointing but ultimately an easy decision to make, Casey said.

"When you're a mum, that's what you do."

Casey's surgery is now set down for June 18. Her hypermobility has affected the existing hardware fusing her C6/7 vertebrae, so once her skull/C4 fusion is healed she will then undergo a C4/T1 fusion which falls into the public hospital system realm.

Even with her upper spine fused Casey said she'll have a range of movement, thanks to her hypermobility. She's hoping at some point in the next 12 months to be able to join in a lot more and give back to the community which has embraced the family.

After Casey won a court battle with Centrelink to receive a TPD (Total and Permanent Disability) pension the family moved from Goondiwindi to what Casey describes as 13 acres of heaven on the Cataract River just east of Tenterfield.

Casey and her partner are slowly turning a shed into a home. Macayla has three horses and continues to do groundwork with them but is very keen to get back in the saddle once cleared by her doctors.

She attends Tenterfield High School and Cobi goes to The Sir Henry Parkes Memorial Public School.

Casey is full of praise for how TSHPMPS principal Anna Starcevic and staff have accommodated Cobi's special needs, even having sourced a special chair to support his head and neck before he arrived.

"It allows him to stay with his classmates for longer than he would otherwise be able to," Casey said.

She is also very grateful for the family's 'amazing' local GP Dr Sunil, who has gone the extra mile with referrals and corresponding with schools on the children's medical needs.

Given the condition of herself and her children Casey said life is a constant round of specialist appointments. On a daily basis her activities are extremely limited and she admits to being a coffee fiend, but makes sure any important appointments are scheduled before lunch.

Her condition has caused a degree of brain damage which sees her fade as the day goes on. Still she remains positive and is eagerly anticipating a future with less pain and a greater degree of normality.

To help go to gofundme.com/f/urgent-help-needed-to-keep-my-head-on.

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