The Long Road

22. Zoe Chung: Raising a Baby with CMS While Facing Breast Cancer

In this episode, I’m joined by Zoe Chung, a mum to her daughter Sophia, who was diagnosed with Congenital Myasthenic Syndrome (CMS) after a complex start to life. Zoe shares her experience navigating the NICU, receiving a rare diagnosis, and adjusting to life with a medically complex child. While still in hospital with Sophia, Zoe was also diagnosed with breast cancer, beginning treatment while continuing to care for her daughter. This is a conversation about facing the unexpected on multiple fronts, the reality of medical motherhood, and what it looks like to keep moving forward through it all. As always, this episode is a reminder that even in the hardest seasons, you’re not alone. Show Links: Very Special Kids - Providing holistic palliative care for children and young people across Victoria. [https://vsk.org.au/] Medical Mums Australia (of kids with complex medical needs): https://www.facebook.com/share/g/18WsAxGBhu/ [https://www.facebook.com/share/g/18WsAxGBhu/] Zoes Instagram account  https://www.instagram.com/zoefromtiktok?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw== [https://www.instagram.com/zoefromtiktok?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==] Thank you for being here, Lisa xx

21. Clare Best: Raising Deaf Children Bilingually

Clare shares her journey raising her 5-year-old son Frank, who is deaf, and what it has looked like navigating diagnosis, early intervention, and raising him bilingually using Auslan and spoken English. We talk about advocacy, language access, and the importance of creating a world where every child has the opportunity to thrive. Clare is also passionate about connecting families with the deaf community and supporting parents to feel confident in their child’s journey. Resources mentioned:  Deaf Connect – https://deafconnect.org.au [https://deafconnect.org.au] Deaf Australia – https://deafaustralia.org.au [https://deafaustralia.org.au] Expression Australia – https://expression.com.au [https://expression.com.au] Follow Clare on Instagram: @raisingbilinguals Thanks for being here, Lisa McKelvey x

20. Courtney Hibbard: Trusting Your Instincts in a Cerebral Palsy Journey

Courtney shares her journey raising her 3-year-old son Larry, who lives with cerebral palsy and complex medical needs. We talk about advocacy, trusting your instincts, and embracing that every child develops in their own time. Larry also has a rare genetic mutation called CBX1, and Courtney would love to connect with other families with a similar diagnosis. Resources mentioned: The Centre of Movement – https://www.centreofmovement.com.au [https://www.centreofmovement.com.au] NAPA Centre – https://napacenter.org [https://napacenter.org] Disability Advocacy Network Australia (DANA) – https://www.dana.org.au Follow Courtney on Instagram: @court.a.ney Thanks for being here, Lisa McKelvey x

19. Makayla Jensen: The Sibling Perspective After Brain Injury

In this episode of The Long Road, I sit down with Makayla Jensen to share the story of her younger brother Beau, who survived a life-threatening drowning accident just days after his 17th birthday. Makayla takes us back to the moment her family received the call that Beau was being given CPR, the week he spent in a coma, and the long, uncertain road of rehabilitation that followed. She speaks honestly about the fear, the waiting, and the shift from being “just a sister” to becoming part of his care and recovery. This is a beautiful conversation about trauma, resilience, and the unseen experience of siblings when everything in a family changes overnight. If you’ve ever wondered what that side of the story feels like, this episode is for you. Hosted by: Lisa McKelvey Show Notes: Bring it 4 Beau Insta Link - https://www.instagram.com/bringit4beau?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==

18. Mel Garcia - Living one day at a time with Epilepsy

In this episode of The Long Road, Lisa sits down with Mel Garcia to share the moment everything changed — when her eight-month-old daughter experienced a prolonged seizure that led to a diagnosis of Dravet Syndrome. Mel speaks openly about the fear, hospital stays, constant vigilance, and the strength it takes to live one day at a time. Knowing firsthand how quickly the emotional and financial pressures mount when a child is in and out of hospital, Mel and her husband Rafa created 1 in 25 — an advocacy initiative raising awareness and funds to support families affected by epilepsy. The name reflects the statistic that 1 in 25 Australians will experience epilepsy in their lifetime. Website: 1IN25.co [https://1in25.co/] Thank you for walking this road with us. Lisa McKelvey x