Team Felix
Our precious firstborn, Felix, arrived on 26th September 2024, the perfect baby boy. At just six months old, our suspicions that something wasn’t quite right were sadly confirmed, and Felix was diagnosed with a mitochondrial disease.
Leading up to his 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 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’re grateful for every day that he’s with us.
We’re thankful for the incredible support network around us, and we’ve been shown immeasurable love from family and friends. Most crucially we’re grateful to The Lily Foundation who’ve 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.
How to support Team Felix
Felix’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.
