Please note this episode contains conversation around suicide.

Shelley Simmond’s life was forever changed by the birth of her second child Fraser, who was diagnosed with Duchenne muscular dystrophy in February 2014; a rare, genetic, progressive and life-limiting condition. Shelley speaks about how she and her family have found their pathway back to happiness, after their lives fell apart at this unexpected and earth shattering news.

Shelley is passionate about accessibility, inclusion, independence and equality for everyone, and is now recognised as a community champion for her advocacy and campaign work for the Duchenne community. She has made it her mission to teach others what Fraser has taught her, and shares their journey through her immensely popular Facebook page ‘Fraser & Friends’.

If you enjoyed this podcast don’t forget to like, rate and subscribe so you never have to miss out!

Rarely Heard is created in partnership between Beacon and Same But Different.

rarelyheard.org

Rarely Heard is sponsored by Alexion, illumina, Cambridge Healthcare Research and Takeda and would not be possible without their support.

Geraldine Renton’s world changed forever in 2020, when her son Ethan passed away due to Hunter Syndrome.

As chronicled in her award-winning blog, ‘It’s Me & Ethan’, and her debut novel, ‘Ethan & Me’, Geraldine and her family managed the rare disease for eighteen years, with a lot of love, laughter, and communication.

She talks candidly about her life with and without Ethan in it, how writing has helped her and finding courage and a path forward in the midst of grief.

If you enjoyed this podcast don’t forget to like, rate and subscribe so you never have to miss out!

Rarely Heard is created in partnership between Beacon and Same But Different.

Read Geraldine’s blog or buy her book here

rarelyheard.org

Rarely Heard is sponsored by Alexion, illumina, Cambridge Healthcare Research and Takeda and would not be possible without their support.

Dan’s rare journey began with the birth of his daughter, Emily who has multiple rare diagnoses.  Dan is an incredibly proud dad, and brilliant role model for his daughter and she has gone on to win her own awards. As well as caring for Emily, Dan is a disability & mental health campaigner.

Over the years Dan has been part of many prominent campaigns and has not been afraid to share his own situation living with mental illness. Dan has become an accomplished and regular broadcaster, championing and discussing the need for absolute equality and more. His motto is: inclusion is not a delusion.

If you enjoyed this podcast don’t forget to like, rate and subscribe so you never have to miss out!

Rarely Heard is created in partnership between Beacon and Same But Different.

rarelyheard.org

Rarely Heard is sponsored by Alexion, illumina, Cambridge Healthcare Research and Takeda and would not be possible without their support.