About the Child You’ll Support

You will be supporting a bright, affectionate 8‑year‑old who lives at home with their mum, dad, twin sister, and baby brother. The family home has CCTV and sensors to help keep her safe, including CCTV in her bedroom.

She has a life‑limiting genetic condition called Late Infantile Metachromatic Leukodystrophy, which affects her brain and nervous system. Over time, her motor skills have reduced, and she now requires full support with daily activities.

She also experiences:

• Mild global developmental delay
• Severe motor impairment
• Constipation
• A sleep disorder

Every Wednesday afternoon, she attends hospital with her mum for a new drug trial, receiving IV treatment with medication shipped specially from abroad.

Daily Care & Support

Chest physiotherapy is an essential part of her routine, completed daily...