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

A nano-rare diagnosis changes more than one life—it transforms an entire family.

In this episode of Realities of the Nano-rare, n-Lorem CEO Stan Crooke sits down with Oliver Glass, Ph.D., MHSc, for an honest and heartfelt conversation about raising a child with DYRK1A syndrome. Together, they discuss the early signs something was wrong, the long search for answers, the realities of daily life, and how their family has adapted to build a new normal.

From daily challenges to unexpected lessons in resilience, love, and perspective, this episode offers a powerful look inside one family’s journey with rare disease.

🎧 Listen now and subscribe for more conversations from the nano-rare community.

Learn more about n-Lorem: https://www.nlorem.org

Episode Chapters

0:00 Intro

1:30 Stan introduces Oliver Glass and his family’s story

7:30 Early signs and symptoms

14:20 Running tests and searching for answers

16:25 The diagnosis journey

23:00 What is DYRK1A?

27:45 Life with Ethan today

32:40 How life looks different as a family

34:00 When the Glass family first heard about n-Lorem

36:20 Biggest worries for the future

38:45 Supporting siblings and balancing attention

43:00 Advice, reflection, and hindsight

#RareDisease #DYRK1A #GeneticDisorders #PatientStory #Podcast #nLorem #CaregiverJourney #FamilyStory

A nano rare diagnosis does not just affect one person. It reshapes an entire family.

Realities of the Nano-rare takes you inside that experience. Hear directly from n-Lorem COO and nano rare mom Sarah Glass as she joins host Stan Crooke to share the day-to-day realities of raising her son Ethan and the ripple effects on their whole family, including his older sister.

Discover how they have adapted, what they have learned, and how they have built a new normal.

Tune in to this powerful two-part series featuring both Sarah and Oliver Glass.

On This Episode We Discuss:

5:08 – Introduction to Sarah Glass and her family's Nano-rare experience

9:00 – Initial challenges of accurately identifying Sarah's son Ethan had a Nano-rare disease

11:30 – Symptoms and telltale signs that there was something else going on with Ethan

14:45 – Identifying that Ethan has DYRK1A

17:20 – Challenges of finding solutions post-diagnosis

20:20 – Navigating Sarah's son's DYRK1A with her unaffected daughter

23: 04 – What's a good day with DYRK1A?

27:01 – What's a bad day with DYRK1A?

34:30 – Managing frustrations of taking care of someone with a Nano-rare disease

37:05 – Compromises in professional life

41:00 – Planning for contingencies

43:10 – Unexpected tender moments of raising someone with DYRK1A

47:30 – Advice for managing expectations, future plans, and working with others

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