Help Fund Research & Raise Awareness for ADSL Deficiency — In Honour of William & Hamish

I lost both of my beautiful sons—William and Hamish—to a cruel and ultra-rare genetic disease called Adenylosuccinate Lyase (ADSL) Deficiency.

ADSL Deficiency is a devastating disorder of purine metabolism caused by mutations in the ADSL gene. It affects both the brain and body—causing seizures, developmental delays, low muscle tone, vision impairment, and behavioural challenges. There is currently no cure, no approved treatment, and limited awareness—even among medical professionals.

But there is hope.

Over the past five years, diagnoses have increased—not because the disease is becoming more common, but because more clinicians are learning to recognise it. Through advocacy and lived experience, I’ve connected with over 100 families worldwide, offering support, connection, and the shared hope that one day early diagnosis might lead to treatment—or even a cure.

This fundraiser is in honour of my sons’ legacy—and for the future of every child living with ADSL Deficiency.

Where the Funds Go

All donations will go directly to the RareBirds Foundation, founded by Nicole and Justin Lytle, who are working tirelessly with families and researchers to accelerate understanding of ADSL Deficiency. This includes:

Funding cutting-edge gene therapy research and novel treatment approaches.

Supporting global collaboration between scientists, clinicians, and caregivers.

Raising vital awareness to improve early diagnosis and care.

Strengthening our rare disease community with education and support.

My Mission

As a bereaved mother, author, and advocate, I am committed to:

Honouring William and Hamish’s legacy through research and awareness.

Supporting the next generation of ADSL research that could change outcomes.

Continuing to educate, uplift, and connect families facing this diagnosis.

Preventing other families from enduring the same heartbreaking loss.

This journey has shaped every part of who I am. I’ve even written a book about it—Bigger Than My Body, a memoir of love, loss, and finding meaning after unimaginable grief. If you’d like to learn more about our story and the boys who inspired this mission, you can find the book at visit https://nataliewatson.com.au/bigger-than-my-body

Whether you can donate, share, or help raise awareness, thank you for standing with us.

Together, we can turn grief into action—and rare into recognised.

With heartfelt gratitude,

Natalie K. Watson

Author • Advocate • Rare Disease Mum

www.nataliewatson.com.au

To Learn more about this Legacy - Visit https://nataliewatson.com.au/bigger-than-my-body

Thank you so much for your support.

Natalie

Our Rare Children -