Realizing Hope for Layken

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