Living with microcephaly: How consistent and reliable care makes all the difference

When Nusrat’s seven-year-old son Zubair was diagnosed with microcephaly, she knew his life would require ongoing care and support. His condition means he needs daily assistance with activities, such as getting dressed, eating and attending school.

As his full-time caregiver, Nusrat ensures he receives the best possible care while also receiving additional support around the home and with Zubair’s daily needs. However, finding consistent and reliable support took time.

The National Disability Insurance Scheme (NDIS) supports people with complex neurological conditions which include structural brain malformations and microcephaly as part of its commitment to assisting those with permanent and significant disabilities.

To help manage Zubair’s needs, Nusrat’s support coordinator referred her to Leora Healthcare. Leora offers in-home and community disability care services that will provide Zubair with access to essential services he needs to thrive.

Microcephaly is a neurodevelopmental condition that causes smaller than usual heads and brains in children. This affects brain development, often leading to intellectual disability, developmental delays, seizures and other health complications. Causes range from genetic factors to prenatal infections.  typically require ongoing supports like speech therapy, occupational therapy and daily living assistance.

In Australia, the NDIS recognises microcephaly as a condition that qualifies for permanent support. This allows families to access resources that aid in the child’s development and quality of life.

Initially, Nusrat engaged with multiple providers but found that consistent, well-trained support workers were not always available. “We switched from other providers because they had irregular schedules and they couldn’t provide staff on time when needed,” Nusrat recalls. This inconsistency made it difficult to maintain a steady routine for Zubair.

The importance of continuity and trust in disability support services became clear. Children with microcephaly like Zubair benefit from support workers who understand their needs, build a relationship with them and create an environment where they feel safe and supported.

Things changed when Nusrat found a provider that offered the structure and consistency she had been looking for. With Leora Healthcare, she finally experienced a more stable and personalised service that met Zubair’s needs.

Every day, Zubair’s support workers provide hands-on assistance, helping him with tasks such as getting ready for school, preparing meals and personal care. At home, they offer support during meal times and household chores, including washing dishes and cleaning . They also help Nusrat with bathing Zubair to make sure his routine remains structured and comfortable.

Zubair’s day starts early, with support workers arriving around 7:00 AM to help him with his morning routine and to get him ready before the school van arrives for pickup. While Zubair is at school, support workers continue to support Nusrat at home by taking care of household tasks and maintaining the space.

The support extends into the evening, with another support worker arriving to help with dinner and bedtime routines. With Leora support workers assisting throughout the week, Zubair receives the consistent care and attention he needs while Nusrat gains peace of mind knowing that help is always there when she needs it.

Beyond daily tasks, support workers provide much-needed respite that gives carers time to rest and focus on other responsibilities. For parents like Nusrat, having reliable support means being able to step away, knowing their child is in safe hands. This short break from full-time caregiving helps prevent burnout and allows families to continue providing the best care for their loved ones.

Having consistent and structured support has allowed Nusrat to focus on being a parent rather than constantly managing care arrangements. More importantly, it has given Zubair the stability and guidance he needs to learn, grow and develop essential life skills.

“He can walk independently and also talk, but he has limited speech,” Nusrat says. “I want him to have more conversations so he can learn from us and from the support workers as well.” Small progress, she says, means everything.

The NDIS provides access to early intervention therapies designed to give children younger than 9 the best possible start. Finding and working with the right provider makes these opportunities more accessible, helping each child receive the care and encouragement they need to reach their full potential.

Caring for Zubair is Nusrat’s priority but she also makes sure to cherish moments of joy with her family. “I love spending time with my kids,” she shares. Whether it’s going out for lunch, having dinner together or taking a short holiday, these moments allow her to create lasting memories. Taking a break, even briefly, gives her the chance to recharge while strengthening family bonds.

Her experience underscores the importance of having a support system that is not just reliable, but also understanding and compassionate.

Nusrat’s journey highlights the significant impact that the right care and support can have, not just for a child with complex needs, but for an entire family.

With a team she can rely on, she has been able to focus on what matters most: being there for Zubair, celebrating his progress and creating meaningful moments together.

Every child deserves the right start. Leora Healthcare provides hands-on support for young NDIS participants, including assistance with early childhood intervention services so your child receives personalised and targeted care while giving you and your family the space to breathe, grow and find balance.

Reach out to our team to know more.