When You Know Something Isn’t Right: Fighting for Answers, MSL2 & Our Children

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 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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