A Mother’s Fight: NDIS Grants Alex a Brighter Future
At only five years old, John has already faced more challenges than most children ever will. Open heart surgery at the tender age of one, coupled with the social and developmental hurdles of Autism, were just the beginning of his story. A diagnosis of Neurofibromatosis (NF), a degenerative condition causing benign tumors, added another layer of complexity to John’s young life.
Early Diagnosis: A Chance to Fight
Megan considers herself fortunate that John’s NF was diagnosed early at six months old. While the news was devastating, it allowed them to begin navigating the challenges ahead. Sadly, a seemingly minor heart condition initially diagnosed as a common variation turned out to be much more serious.
A Fight for John's Health
John’s frequent respiratory infections escalated at just six months old, leading to a shocking discovery. His initial heart diagnosis was inaccurate. He actually had a double aortic arch, a life-threatening condition requiring immediate surgery. At one year old, John bravely underwent open heart surgery.
Developmental Delays and the Burden of Therapy
Recovering from surgery, doctors observed that John hadn’t reached his developmental milestones. With 50% of children with NF experiencing learning or attention difficulties, John’s diagnosis of global developmental delay came as no surprise. However, the recommended therapy options – speech, occupational, and physiotherapy – came with a hefty price tag.
The Weight of Cost and Care
Megan was forced to return to work to cover these costs, a difficult decision considering John’s frequent illnesses and therapy appointments. “He needed one-on-one attention,” Megan explained, “but the cost of weekly therapy was astronomical.”
The NDIS: A Path to a Brighter Future
Relief arrived in the form of the National Disability Insurance Scheme (NDIS) and the support of Oyster Care. This program now funds John’s weekly therapy sessions, including speech and occupational therapy, and provides a continence nurse for toileting assistance. The ultimate goal: to ensure John can thrive in a mainstream classroom setting.
Empowering Inclusion Through the NDIS
“Before the NDIS,” Megan shared, “it was frustrating. Early intervention is key for children with NF, but how can I afford it?” The NDIS lifted a heavy financial burden. “John now has all his therapy covered. It’s a dream come true!”
Collaboration and Building a Support Network
The NDIS funding also allowed John’s school to apply for a support worker, further easing the burden on Megan. Additionally, some therapists now see John during school hours, fostering collaboration between teachers, therapists, and Megan at home.
A Weight Lifted: Relief and Renewed Hope
Megan feels a newfound sense of relief. “There were times I was burnt out,” she admitted. “Now, the weight is lifted. Everyone worked together to give John the best chance, and he has incredible advocates in his corner.”
Looking Forward with Optimism
With a supportive network and the NDIS in place, John is making strides both socially and developmentally. Megan also has more time to devote to her other son, Cris, who has been a constant source of support for John.
While NF presents unknowns for the future, Megan remains optimistic. “The NDIS can provide the extra support John might need as an adult,” she shared. “We are so fortunate.”
