Welcome to Rory’s Hope, a fund-raising website that aims to support new research into Sudden Infant Death Syndrome (SIDS) and end an unacceptable cycle of heartbreak for thousands of families who unexpectedly lose their babies.

Our son Rory died in the early hours of October 15, 2023. He was four months’ old.

For those few weeks of his precious life, he was a healthy happy baby, developing well and then suddenly, without warning, he was taken from us.

We were catapulted into the world of baby loss, and one where there seemed to be barely any explanations or answers. We found that hard to believe…and we are not prepared to accept that.

We wanted Rory’s life to be important, and his death to be important too.

And we want to try to make sure that SIDS is not just something parents must accept. We believe it is preventable and that there must be an answer out there.

It was while working through my grief as his heartbroken mother that I came across the work of Dr Carmel Harrington in Australia.

Her team at The Children’s Hospital at Westmead in Sydney have identified Butyrylcholinesterase (BChE) as the first biochemical marker that could help detect babies more at risk of SIDS while they are alive.

That is an important breakthrough.

The study by Dr Harrington, who lost her own child to SIDS three decades ago, found BChE levels were significantly lower in babies who subsequently died of SIDS compared to other infant deaths.

This may hold the key to screening for babies vulnerable to SIDS and help tackle the devastating heartbreak faced every year by thousands of parents.

In Rory’s memory, we aim to partner with Dr Harrington – along with a number of other organisations globally – to raise funds to advance her research and develop a test that identifies SIDS susceptible babies.

This is the goal of Rory’s Hope.