Childhood Dementia: A Family's Journey to Save Their Daughter (with Emily Forrester)
The Dementia CollectiveShow Notes
What if your two-year-old was happy, healthy, and meeting her milestones, but you were told she would eventually begin to lose everything she had learned?
In this episode, Andrew Karesa sits down with Emily Forrester, mum to Leni and childhood dementia advocate, to share her family’s journey after Leni was diagnosed with Sanfilippo syndrome Type B, a rare and progressive form of childhood dementia.
Emily takes us through the unexpected path to Leni’s diagnosis, including the genetic testing that initially gave their family the wrong answer, the reality of raising a child with an ultra-rare condition, and what it means to know that without an effective treatment, Leni is expected to progressively lose her speech, cognition and mobility.
Together, Andrew and Emily explore the gaps families encounter navigating childhood dementia, from delayed diagnosis and fragmented care to education, work, research funding and access to clinical trials. Emily also shares why her family is fighting to get Leni access to potential treatment while she is still young, and why early diagnosis can make such an important difference.
In this episode: Who Leni is today and what life looks like for her family How Leni was diagnosed with Sanfilippo syndrome Type B Why childhood dementia can be so difficult to diagnose What Sanfilippo can mean for a child’s development Why early diagnosis matters The fragmented system families are expected to navigate The impact caregiving and advocacy can have on work and family life Why Emily believes childhood dementia needs greater recognition The clinical trials offering families hope for potential treatments Why funding remains such a major challenge in rare disease research How sharing Leni’s story has created awareness around the world What people can do to support families affected by Sanfilippo and childhood dementia
This is a conversation about childhood dementia, family, motherhood, rare disease, advocacy, hope, and one family’s fight to give Leni the future she deserves.
Learn more at: https://www.bluebellvillage.ca https://www.gofundme.com/f/lenis-lifesaving-treatment Saving Leni Book (Amazon)
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This episode is brought to you by Eugeria. Check out their website for dementia products you can trust.
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Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use.
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