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RSS Feed When You Know Something Isn’t Right: Fighting for Answers, MSL2 & Our Children
Love to hear from you don’t be shy send me a message ✨ https://www.blogpreston.co.uk/2026/01/teenager-is-one-of-just-25-people-in-the-world-with-ultra-rare-neurodiversity/ In this episode, I’m sharing a really personal and important conversation — one that so many parents will recognise. This episode is about fighting the system for our children. About that deep gut feeling when you know something isn’t right — even when professionals can’t yet give you answers. I talk openly about: Our jou...
Love to hear from you don’t be shy send me a message ✨
In this episode, I’m sharing a really personal and important conversation — one that so many parents will recognise.
This episode is about fighting the system for our children.
About that deep gut feeling when you know something isn’t right — even when professionals can’t yet give you answers.
I talk openly about:
- Our journey towards diagnosis
- What MSL2 is, explained simply
- Why rare genetic conditions often take years to be identified
- The emotional toll of constantly advocating for your child
- The frustration, exhaustion, and strength that comes with navigating assessments, referrals, and systems that aren’t built for complexity
This episode isn’t about blame — it’s about awareness, validation, and letting parents know they are not imagining things, not being dramatic, and not alone.
If you’re a parent who’s ever been told to “wait and see” while your instincts scream otherwise — this episode is for you.
And if sharing our story helps even one family feel seen, supported, or encouraged to keep pushing for answers, then it’s worth it 💛
Thank you for listening, for sharing, and for helping raise awareness around rare genetic conditions like MSL2.
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