Happy Mr Bond

Charity Adams, contented Mummy, wife, expat, and former flogger of high-end clothing within the NYC fashion industry. In 2004, Charity and her Australian husband, Steven, chose to call Dubai home before welcoming their son, Bond Walter Toohey. Temporarily immersed in the chaotic lifestyle of a stay-at-home mum, Charity restarted her fashion career until their son’s special needs became apparent at two years of age – dictating a redirection for the entire family.

For eight years, their diagnostic odyssey saw them travelling the world for answers to their son’s needs whilst forging meaningful connections with its inhabitants. Unwavering tenacity guided the family to uncover Bond’s ultra-rare disease, shared with only 350 people globally. Valiantly fighting every battle the disease incited, including epilepsy, Charity focused her innate pertinacity on elevating him beyond his limitations. Through loving perseverance, she transformed Mr Bond into a happy and confident teenager who was living in partnership with an ultra-rare disease until his sudden, unexpected death in epilepsy (SUDEP).

Now, in her third incarnation of self, Charity enjoys writing and a steadfast yoga practice while continuing to search the world for heartfelt connections and yummy wine. Boston Children’s Hospital’s Director of Epilepsy, Dr Philip Pearl, invited Charity to join him in speaking at the Partners Against Mortality in Epilepsy (PAME), in conjunction with the American Epilepsy Society’s annual conference in December 2024. By sharing her family’s story, she is shining a light on the often-overlooked ultra-rare disease community while raising awareness to remove antiquated stigmas, promote education both intellectually and emotionally, and inspire research to ensure loved ones remain within our embrace.