From Heartbreak to Hope: Protecting Families and Reaching Young People

When we lost Poppy, our world changed forever. She was bright, healthy, and full of life, the kind of young woman who lit up every room. Her sudden death left us devastated, and with one urgent fear:

Could this happen again?

Our children were grieving their sister while possibly at risk themselves. That fear became our mission to protect them.

Finding Answers and Keeping Our Children Safe

The early months were filled with desperation. We fought to access screening, specialists, and coordinated care. Eventually, we found a team that listened and acted. Through ECGs, echocardiograms, exercise tests, and genetic counselling, we finally had a plan to keep our children safe.

Knowing that early screening could have saved Poppy fuels our determination to ensure other families never face this alone.

Alongside medical action, emotional support through Poppy’s Light Foundation, Select Psychology, and CALM Together has helped families navigate trauma, grief, and fear with specialist care.

Why Early Screening Matters

Research shows:

• Around 30% of SADS families receive a diagnosis through clinical screening.

• With genetic analysis and spleen sampling, the diagnostic yield rises to 45%.

• Early awareness and treatment can prevent further tragedies.

  
  

Poppy didn’t get that chance, but many others now will.

A Legacy Reaching Poppy’s Own Age Group

One of the most uplifting parts of this journey has been the extraordinary support from St Chad’s College, Durham University, students Poppy’s age, living the future she should have had.

Their kindness and energy have been incredible this term:

•  Pumpkin-carving evening with record attendance

•  Hope Ball, welcoming around 300 students

•  Weekly toastie bar, raising an incredible £2,700

These young people are not only raising funds but spreading awareness, championing wellbeing, and carrying Poppy’s light forward in their own generation. Their actions ensure families can access support, care, and guidance that Poppy never had.

We are honoured to have been invited to join them for their formal dinner in January, where we will meet these inspiring students, speak about the charity, and share Poppy’s story. I am so looking forward to joining these incredible young people and celebrating their compassion, creativity, and dedication.

The students’ warmth and generosity, and the support of Principal Margaret, remind us that Poppy’s legacy is alive and vibrant, reaching the very people she would have been alongside today.

A Growing Community of Hope

From students to clinicians, psychologists to parents, an entire community is coming together to keep young people safer:

• Families now have access to coordinated screening

• Children and adults receive trauma-informed support

• Awareness of SADS is growing across schools and universities

• Young people themselves are taking action, raising funds, and spreading hope

  
  

Slowly, our family has found its way back toward light.

We carry Poppy in every step, and we honour her by keeping others safe.

Her Light Lives On

If sharing our story saves even one life, then Poppy’s legacy becomes a beacon for others.

Through awareness, screening, support, and the extraordinary efforts of communities like St Chad’s College, her light is reaching far beyond our home, illuminating the lives of families and young people just like her.

Recommended Readings and Evidence-Based Guidance

For Parents and Families

1. Hanauer, C., Telaar, B., Rosner, R., & Doering, B.K. (2024). Efficacy of psychosocial interventions for grief symptoms in bereaved children and adolescents: A systematic review and meta-analysis. Journal of Affective Disorders, 350, 164–173.

2. Family Bereavement Program (FBP). Evidence-based family interventions for grieving children. NCBI PMC

3. National Child Traumatic Stress Network. Supporting bereaved children: Best practices. NCTSN

For Clinicians

4. Circulation (2017). Utility of post-mortem genetic testing in cases of SADS. PubMed

5. European Journal of Preventive Cardiology (2025). Inherited cardiac conditions and sudden arrhythmic death. Academic OUP

6. Cardiology in the Young (2024). Management of asymptomatic family members with RYR2-mediated CPVT. Cambridge Core

For Schools and Universities

7. Rosner, R., Kruse, J., & Hagl, M. (2010). Meta-analysis of interventions for bereaved children and adolescents. Death Studies, 34(2), 99–136.

8. Anonymous (2020). Parent-focused bereavement interventions: Systematic review. BMC Palliative Care, 19:28.

9. Avis, K.A., et al. (2025). Efficacy of bereavement interventions: Umbrella review. Harvard Review of Psychiatry, 33(3), 127–148.

For Young People

10. SADS UK Family support, screening guidance, and awareness resources: SADS UK

11. Poppy’s Light Foundation, Support, counselling, and advocacy for young people: Poppy’s Light