Patient Empowerment Program: A Rare Disease Podcast

Realizing Hope for Layken

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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 hope through science 
  • 56:00 – Layken's first treatment 
  • 57:30 – Layken's progress 
  • 58:50 – Positive verbal progression 
  • 1:01:50 – Callan's advice to families 
    • ...more
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    Patient Empowerment Program: A Rare Disease PodcastBy n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)
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