This week on my podcast series, 'Interview with a Rare Mother,’ I had the absolute privilege of sitting down with Kaydi to hear her beautiful, honest, and heartfelt story. Like so many rare mums, Kaydi carries the weight of both love and uncertainty — and does so with grace, resilience, and a fierce devotion to her family.
Kaydi is a mother of two boys, and her youngest son, Finley, was diagnosed with the rare genetic condition ADSL Deficiency. She shared openly about how Finley’s diagnosis unfolded—beginning with feeding challenges and delayed milestones as a baby, and later, a series of tests that eventually led to a name for what they were facing. But like many rare families, receiving a diagnosis didn’t come with a roadmap or clear treatment options. Much of their journey has been a process of navigating the unknown, often without the level of medical support they hoped for.
Throughout our conversation, we spoke about many of the day-to-day realities of raising a child with a rare disease, especially the unpredictability of seizures, the difficulty of accessing therapies and support services, and the added complexity that comes with insurance and living in a rural area. And yet, even in the face of these challenges, Kaydi’s perspective is one of strength, gratitude, and finding small pockets of joy wherever possible.
She shared with me how Finley’s infectious smile and positive energy set the tone for their mornings. Their days are filled with family time, dancing, board games, and simple moments like snuggling at bedtime under a starlight projector. Kaydi also finds peace and self-care in her quiet moments with her chickens and goats, and enjoys the lighter side of life listening to her favourite true crime podcast.
Like so many rare parents, Kaydi reminds us of the importance of community — and how connecting with other families who truly understand makes all the difference. We talked about how our Adsl Deficiency Facebook support group has become a place of comfort, information, and shared experience for both of us.
I’m so grateful to Kaydi for sharing her story with such honesty and warmth. Stories like hers are why I continue these interviews — to give voice to the real, raw, and beautiful lives behind rare diagnoses, and to remind all rare parents that they are never as alone as they sometimes feel.
If you haven’t yet, you can watch the full interview with Kaydi now on my YouTube channel. And as always, if you’re a rare mother who would like to share your own story, please reach out — I would love to hear from you.
Here are the links I mentioned at the end of the interview.
🔗 Our Journeys with Adsl Deficiency – A Private Support Group for Families
If your child has been diagnosed with ADSL deficiency and you haven't found us yet, we warmly invite you to join our private support group.
Please help us raise awareness of Adsl deficiency by sharing this podcast with others. Every share helps shine a light on this ultra-rare condition and connects families who might otherwise feel alone.
We’re on a mission to reach 1,000 followers on our dedicated Facebook page—a space for community, connection, and support.
🔗Follow us here: Adsl Deficiency Research and Awareness Public Facebook Page -Direct link: https://www.facebook.com/share/19AgSkzmzn/?mibextid=wwXIfr
🔗DONATE to The Rare Birds Foundation for Adsl Deficiency Research Projects.
🔗Order my latest book - Unstuck: From Stuck to Unstoppable. Release, Restore, and Reclaim Your Life Through Somatic Self-Care Practices.
Learn more by visiting https://nataliewatson.com.au/home
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