Childhood Dementia: A Family's Journey to Save Their Daughter
The Dementia Collective #50 is Live!
This episode can be found HERE
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
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Don’t Forget to Sign Up for blueBell Connect
blueBell Connect, our patent-pending dementia caregiving tool, is available for caregivers to sign up.
blueBell Connect provides caregivers clinically valid, personally specific and culturally appropriate support recommendations in your daily care for individuals living with dementia.
Click HERE for a blueBell Connect brochure
For more information, check out bluebellconnect.ca or email [email protected]
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