Realizing Hope for Layken
From Patient Empowerment Program: A Rare Disease Podcast by n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)
May 6, 2026 · 1h 5m · Episode 96
About this episode
Callan Pleasant shares her family's journey with her daughter Layken's nano rare diagnosis HNRNPH2 and the hope provided by n-Lorem.
A nano rare diagnosis reshapes an entire family. In Realizing Hope for Layken, Stan Crooke speaks with Callan Pleasant about her daughter Layken and their journey with HNRNPH2. Callan shares the early signs, the long road to diagnosis, and what it takes to navigate care while holding onto hope. Through n-Lorem, Layken’s story is moving forward with new possibility. Listen to the full conversation with Callan Pleasant. Show Notes: 1:20 – Introduction of special guest Callan Pleasant and her family, namely her daughter Layken 3:50– Parenthood and speed bumps 7:30 – First medical consultation regarding Layken 9:30 – No such thing as a lazy baby. A second look at Layken 10:40 – Finding a diagnosis: HNRNPH2 13:50 – Feeling alone after realizing Layken has a nano-rare disease 16:30 – Managing frustrations and blaming themselves 20:30 – Managing expectations 23:00 – Challenging Layken to communicate and move 26:30 – Finding solidarity with other families 29:30 – London, Layken's sister 38:40 – An explanation of HNRNPH2 along with signs and symptoms 47:30 – Considering possible treatments and risks 49:30 – Taking a leap of faith and submitting for ASO treatment 54:00 – n-Lorem providing…
People in this episode
Host: Stan Crooke
Guest: Callan Pleasant
Topics covered
- rare disease
- diagnosis journey
- parenthood
- healthcare navigation
- hope
- treatment options
Keywords
- HNRNPH2
- rare disease
- diagnosis
- treatment
- parenthood
- healthcare
Mentioned in this episode
Organizations: n-Lorem, HNRNPH2
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