Help Eli and Ezrah get the help they need

Update:

After waiting three years for genetic testing, Eli received results for a rare genetic condition called COXPD55 but doctors are still unconvinced that this is responsible for their condition.

It’s the only lead we’ve had since 2017 and it’s the only one that makes sense, but it’s like banging our heads against a wall to get the public system to gear us.

We have just applied for citizenship so hopefully one day in the future our costs will all be covered and we will have NDIS access, and carer payments but for now it’s all up to us (although we’ve had some incredible help along the way from you all)❤️

Original story:

We've been quietly struggling, undiagnosed, for a few years now.

And while we’ve had a few ideas about the cause, doctors' testing and investigation have been inconclusive.

For years we were told not to worry, and that they'll be fine. They'll catch up.

 

We hate asking for help, so it's taken a while. Let me explain:

We aren't eligible for NDIS due to residency requirements, even though the boys were all raised here from young babies.

We don't get Carer's Payment or Allowance because of residency unless we are caring for someone over 16 years.

We've suffered as business owners through the pandemic - but neither of us can work full-time for someone else as the boys' care needs have become too great.

We don't have family close-by who can help.

 

Eli and Ezrah have become completely dependent on assistance to move around the house, and often topple over and hurt themselves or others, even when crawling.

They've suffered from:

Hearing loss

Cerebellar ataxia (inability to coordinate all movements)

Lack of speech

Cognitive impairment

Nystagmus (involuntary eye movements - they can't look at anything for even a second as their eyes drift off constantly).

 

This fundraiser is now aimed at private medical appointments and testing to obtain a diagnosis.

No words can describe how much this funding would mean to us, and them.

Thank you so much for reading this, and for your kindness towards us and our family.

Kind regards,

Brandon and Jessica