Overview
- Jonny Butcher, 29, first noticed a shooting shoulder pain on his honeymoon and developed tremors and coordination loss over the following year.
- After spinal and brain scans on the NHS returned clear results and clinicians considered a functional neurological disorder, the couple paid £3,000 for private tests that confirmed ALS/MND in February 2026.
- The disease has progressed quickly since that diagnosis, leaving Jonny wheelchair-dependent within weeks and at stage three of five in disease staging.
- Recent respiratory testing showed falling lung capacity and he now uses a non-invasive breathing machine for short periods while the couple focus on emotional support and completing a bucket list.
- Motor neurone disease is a progressive neurodegenerative condition with no cure, and clinical staging plus respiratory decline guide prognosis and urgent care needs for patients and carers.