Maryam – Nutrition and Therapy Support

Maryam is a bright and resilient infant with a rare genetic condition known as Coffin-Siris syndrome. Diagnosed shortly after birth, she has experienced complex medical needs, including profound muscle weakness and an inability to feed safely by mouth. Maryam receives 100% of her nutrition and hydration via a nasojejunal feeding tube.

As her family are not yet eligible for Medicare or NDIS funding, they face the full cost of essential care—placing a significant burden on their finances. Her parents, juggling multiple jobs while caring for Maryam and her older brother, have been under severe pressure to cover ongoing therapy and medical needs.

In 2024 and 2025, MAD supported Maryam with funding for essential enteral feeding supplies and nutritional formula, as well as speech, physiotherapy, and occupational therapy—all critical for her growth, development, and comfort. These supports were requested as a short-term bridge until the family’s permanent residency is approved, which will unlock access to public healthcare programs.

The healthcare team caring for Maryam shared:

“This will provide such relief to Maryam’s family… I cannot thank you enough. There really is nothing else like MAD out there—it is so desperately needed. And so quick and responsive. The family are incredibly grateful for the support that has been provided.”
— Charlotte, Paediatric Dietitian

Thanks to this support, Maryam’s family have had breathing space to focus on what matters most—her health and wellbeing—while they navigate an incredibly difficult chapter.