Allinto’s Support Coordination services are lightening the load for the family of a child with a rare genetic disease and disabilities.
Jasper, who is just five years old, has de novo deletions in his SCN2A and SCN3A genes.
He is the only case in literature with his exact mutation across both genes, which has caused ASD level 3, epilepsy, epileptic encephalopathy, intellectual impairment and mobility issues.
Jasper’s Mum, Shannon said discovering Support Coordination with Allinto has provided some much–needed relief for the family.
“As a parent, I was experiencing significant burnout from engaging new providers, organising therapy appointments and ensuring we weren’t exhausting Jasper’s NDIS budget. This was on top of the daily responsibilities that come with raising children,” said Shannon.
“Luckily, our Support Coordinator has taken all of that off my shoulders so that I can just focus on being a parent.”
Allinto Support Coordinator, Alyssa works closely with the family and said navigating the complexities of Jasper’s case has been both challenging and rewarding.
“When I was first introduced to Jasper, I realised his NDIS plan wasn’t sufficient for his complex needs,” said Alyssa.
“We have now been able to explore new therapies and engage additional Support Workers to enable his progress and development. We are also advocating for him to receive more funding so that we can access a bigger range of services.”
Shannon said she appreciates having a Support Coordinator who understands the standard she expects from service providers and will regularly share photos and videos with Alyssa that capture Jasper’s journey.
“It is a really great feeling knowing Alyssa is invested in my son’s barriers, needs and successes,” said Shannon.
Learn more about how Allinto’s Support Coordination services can help you or get in touch with the team today.