In loving memory of Leo Maximus Angus Bush - forever in our hearts 

24th October 2021 to 10th January 2022

We've created the Leo Bush Brighter Future Fund, in partnership with The Great Ormond Street Hospital Children's Charity, with the aim to raise £79,000. That's £1,000 for every day of Leo's life.

Leo's Brighter Future Fund enables us to raise money in memory of Leo for a cause very close to our hearts. Anyone and everyone can get involved and fundraise, or simply make a donation, via JustGiving to help us to reach our target. We are forever grateful for all your support.    

The money raised will go towards funding the Gene-STEPS research project: Shortening the Time of Evaluation in Pediatric epilepsy Services— a study of the impact of rapid genomics to diagnose severe forms of epilepsy in babies. This three-year study has the potential to transform lives for babies with epilepsy—and to establish a model that can be used to rapidly diagnose and treat other diseases in childhood. In fact, Leo was one of the first babies to receive a diagnosis through this program. 

The Gene-STEPS project is a research program being run across four of the world's leaders in child health research and care - Boston Children’s Hospital (USA), Great Ormond Street Hospital (UK), Melbourne Children’s (Australia), and The Hospital for Sick Children (Canada), as part of The International Precision Child Health Partnership (IPCHiP). Together, they’re sharing expertise,
knowledge, and data to tackle and solve major child health challenges.

Specifically, it takes an average of five years and many rounds of testing for a child to be diagnosed with a rare disease. Windows of opportunity for treatment can be lost. A child’s chance of living life to their fullest potential is severely reduced. And many children die young, before their family receives a diagnosis. 

With whole genome sequencing and other technologies, IPCHiP aims to transform how these devastating diseases are diagnosed and treated. For too many children though, these approaches remain out of reach because they’re not yet standard of care or funded by government

Leo's Story

Leo was born on 24th October 2021 by emergency c-section and nine weeks premature. After making very good progress in his first week, he began to suffer from a multitude of setbacks that made him seriously unwell. As well as seeing our darling baby boy suffer and being pumped full of so many medications, our anguish was compounded by the uncertainty around the underlying cause of his symptoms and what the future would bring.

Thanks to very advanced genetic testing carried out by Great Ormond Street Hospital as part of the IPCHiP Gene STEPS project, we were informed on Christmas Eve that Leo was found to have an extremely rare mutation in the BRAT-1 gene. We were told that the early onset and aggressive nature of Leo's symptoms meant that his condition was classified as severe, and although they couldn't say exactly how the next weeks and months would pan out, Leo was very unlikely to survive beyond infancy. Our mindset shifted from a state of high stress and anxiety to one of devastation and disbelief.

After the new year Leo's condition began to deteriorate quite rapidly, manifesting primarily in seizures which became more and more constant, severe and resistant to medication. Ultimately, this all became too much for Leo and his little body which had endured so much. He died in our arms, finally at peace, on the afternoon of 10th January 2022. He was 79 days old.

He was the bravest little boy and inspired us immensely. He taught us so much about life and love and will be forever cherished.

We'd like to create a legacy for Leo, and have committed to raising £79,000 towards year one of the IPCHiP Gene STEPS project. The project is working to make genomics part of routine healthcare practice, something which we were only able to benefit from as a result of this project being undertaken at GOSH. We were fortunate that we were in the right hospital for a diagnosis to be found for Leo, which, however devastating, allowed us in some way to start processing what lay ahead. Many parents are not so lucky and we hope that the project may support others with providing a sense of clarity and lessening the anguish of the unknown. Early diagnoses may also lessen the level of medical intervention, much of which in our experience was futile and perhaps even counterproductive, and lead to more holistic treatment plans which we hope might prolong length and quality of life.

We'd like to thank everyone for their support.

Andy & Sofie