Remembering Aubrey
Aubrey was born on 26th December 2018. He was healthy, happy and thriving. It wasn’t until he was between 9-12 months that we realised he wasn’t meeting ‘normal’ milestones for his age. We knew then something wasn’t right.
After visits to the GP and eventually a paediatrician, his development still wasn’t improving so they finally agreed to do some further investigations. We then waited almost a year for an MRI scan which he finally had in April 2021. In the meantime, we were put in touch with all the services we needed to support Aubrey: speech and language, physio, occupational therapy etc.
We got Aubrey’s results from the MRI in May 2021 which showed he had a type of mitochondrial disease. In November 2021, it was confirmed through blood tests that Aubrey had Leigh syndrome.
Aubrey's mitochondrial disease affected him every day in many ways. He was non-verbal, couldn’t sit unaided, crawl or walk and had global development delay. It also affected his eating – he had an unsafe swallow and in June 2022 he had a gastrostomy and a button fitted for all fluids.
In August 2024 Aubrey started having seizures and in the September he was diagnosed with epilepsy. We then started a journey of lots of ambulance calls and countless trips to hospital, different medications and specialist support.
In February 2025 we were admitted to hospital and the doctors couldn’t stop Aubrey’s seizures. We had to be transported to Manchester Children’s Hospital, where we spent 3 weeks there in ICU, HDU and the general ward. Things seemed like they were improving and we thought we’d be taking our beautiful boy home but then things took a turn when he started to struggle with his breathing, and we had to go back to ICU.
Sadly, on 17th March, after fighting with all his strength, Aubrey gained his angel wings and will be forever 6. He was the happiest boy, he made everyone around him smile every day and we miss him dearly.
How to support Remembering Aubrey
Aubrey’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
