I am Mummy to two children - daughter April and little brother, Fraser. By day, I work in London specialising as a Company Secretary with 20 years’ experience in HR, operations and governance practices. On a personal level, I have a keen interest in genetics and work with Genomics England as part of their 100,000 Genomes Project.

In 2014 at the age of just 11 months, Fraser was diagnosed with Duchenne – we have no family history and neither myself or April carry the mutated gene. My son has not followed a usual Duchenne presentation, having never been able to walk independently and using a wheelchair full-time from the age of 2.

I am an active advocate for the Duchenne community and for Disability as a whole. I campaign to improve society perceptions of inclusion and I work with Action Duchenne and partner charities to strive for changes. I have a voice and I am not afraid to speak loud for my son and all others like him because I want to make a difference and ensure everyone with Duchenne has the fulfilling life they deserve.

Read Shelley's blog 4 years after diagnosis.