Our precious first born Felix, arrived on the 26th September 2024, the perfect baby boy. At just six months old our suspicions that something wasn’t quite were sadly confirmed, Felix was diagnosed with a mitochondrial disease.

Leading up to diagnosis in March 2025 we had some concerns about Felix’s development and general health. Red flags included; a severe long lasting tummy bug, weakening body strength and most apparent was that he’d stopped smiling, laughing and even crying.

After multiple GP visits we were finally rushed to A&E as Felix began having seizures, commonly known as infantile spasms. We spent a brutal week on the Paediatric Neurology ward and Felix underwent countless tests including an MRI, lumbar puncture and EEG. A clinical diagnosis of Leigh’s Syndrome was soon confirmed. Felix’s gene mutation is MT-ATP8, specifically M.8424T>C at 97%. It’s extremely rare and very little is known about it.

Daily medications currently keep Felix’s seizures under control, he’s seen by numerous teams who continue to be impressed by his progress.

Our beautiful boy is paving his own mighty path and we’re delighted. We are grateful for every day that he is with us.

We are thankful for the incredible support network around us, we’ve been shown immeasurable love from family and friends. Most crucially we’re grateful to The Lily Foundation who have been a genuine lifeline for us from the start. The support they provide is truly transformational to families like ours who are going through something inexplicable.