Jul 14 2024 53 mins
In this episode, Amber-lee, your host, sits down with Ebony, a young mother from Brisbane, as she shares her journey living with Epilepsy and Charcot-Marie-Tooth disease (CMT), which is a group of inherited disorders that cause nerve damage. Ebony opens up about her diagnoses, the impact of these conditions on her young life and current life, and the emotional rollercoaster of discovering her son Flynn has inherited CMT sharing the early signs of the condition to the supportive interventions that have helped him thrive. Ebony shares the challenges specifically living with epilepsy and the many unknowns in her life. This episode sheds light on the realities of living with a disability and raising a child with a genetic condition and the importance of support, education, and understanding in navigating these challenges. Ebony shares her reflections on resilience, acceptance, and advocacy and it was a beautiful conversation.
You can find Ebony: @kingeeebs
Since this episode was recorded, Ebony has had her second baby via elective ceasarean and is enjoying the newborn bubble. For those wanting an update for her son Flynn, he is now walking and is enjoying his newfound skill. Ebony mentions that his feet still turn inward but they have been seeing a podiatrist to help as well as continuing with physio and hydro. Ebony says that Flynn has come so far since our conversation and that CMT definitely hasn’t stopped him from living a full life as a toddler.