Maryam – Nutrition and Therapy Support

Maryam is a bright and resilient infant with Coffin-Siris syndrome. This rare genetic condition has caused complex medical needs.

She has profound muscle weakness and cannot feed safely by mouth. Maryam receives all nutrition and hydration through a nasojejunal feeding tube.

Her family cannot yet access Medicare or NDIS funding. As a result, they face the full cost of Maryam’s essential care.

This has placed significant pressure on the family. Maryam’s parents care for her and her older brother while also juggling multiple jobs.

In 2024 and 2025, MAD provided Maryam nutrition and therapy support. This included funding for essential enteral feeding supplies and nutritional formula. MAD also helped fund speech therapy, physiotherapy and occupational therapy.

These supports are critical for Maryam’s growth, development and comfort.

MAD provided this support while the family awaits permanent residency. Once approved, permanent residency will allow the family to access public healthcare programs.

Maryam’s healthcare team 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

This support gave Maryam’s family some breathing space. It helped them focus on Maryam’s health and wellbeing during an incredibly difficult chapter.