Folk song honours 42-year caregiving journey in Devonport
Music therapist Alex Morse wrote a song honouring Rebecca McCoy. She lived 42 years with a rare genetic condition.
Rebecca McCoy was born with a condition caused by ALG1 gene mutations. Doctors did not diagnose it until DNA testing in 2022, after 41 years.
Rebecca McCoy was non-verbal, unable to walk, and relied entirely on her parents, Judi and Alan McCoy, and sisters Emma and Jess. Rebecca McCoy loved music and responded to it with her eyes.
Music therapist Alex Morse met Rebecca through therapy appointments. He wrote a song called What If to honour her life.
The song premiered during National Carers Week. It explores ordinary moments that matter differently when full-time care is needed.
Rebecca's mother said hearing it was overwhelming. Morse will perform the song at Mount Roland Folk Festival in Sheffield.
A debut EP is due in November.
- 42 years
- Years with condition
- 2022
- Diagnosis year
- 41 years
- Years undiagnosed
- ALG1
- Gene mutation
Why it mattersThe song celebrates a life lived with love and family devotion. It honours carers who often work unseen.
AustraliaLocal Tasmanian story highlighting the work of carers across Australia and the creative ways communities honour the people they love.
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