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On the 28th March 2025, instead of setting off on our first family holiday, we rushed to A&E as our precious baby boy was having seizures. Four days later we received tragic news that turned our world upside down.
Our beautiful Felix was diagnosed with a very rare & complex, genetic disorder. A progressive, life limiting disease of which there is currently no cure. The official diagnosis is Leigh’s Syndrome, which is a mitochondrial disease (more on this shortly).
The news came as a complete shock to us, for the first six months of his life Felix behaved like any other baby, our perfect boy, bringing nothing but joy to those around him. Reading this now you might find it hard to believe because right now he is still that same bright, beautiful button.
In total we spent seven days on the Paediatric Neurosciences Ward, watching Felix endure countless tests all being sent with great urgency to various parts of the country. These included CT and MRI scans, a lumbar puncture, an EEG, countless blood tests, an IV drip for 3 hours a day, plus constant observations day & night. This was an utterly terrifying and horrific week.
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We’d never heard about Leigh’s Syndrome or mitochondrial diseases before Felix’s diagnosis and imagine this may be the case for many people. His diagnosis is extremely complex, and as a family, we still only understand a tiny amount now, which we’ve attempted to explain below:
Put simply; our cells contain tiny structures called mitochondria, often described as the body’s ‘batteries’. Their job is to produce energy for us to grow, move, and function properly. In mitochondrial diseases these batteries fail to function as they should,
so the body doesn’t get the energy it needs. Leigh’s Syndrome is a degenerative condition, that can affect almost any part of the body- it often impacts organs that use the most energy, like the brain, heart, muscles and digestive system. It presents differently in every child with widely ranging symptoms, so much remains unknown.
Felix has a genetic mutation (a tiny spelling mistake) in his mitochondrial DNA. His specific mutation is so rare there’s only one other reported case in the UK, this means very little is known about how it will affect him. However, as Felix began showing signs within his first year of life, we’ve been told that the condition is likely to be more severe, with significant physical and developmental challenges over time.
A side effect of the condition is Infantile Epileptic Spasms causing the seizures that rushed us to A&E in the first place. Felix currently takes medication every day which, at present, are working wonderfully to keep the seizures under control.
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To share something positive, Felix has done incredibly well throughout this horrific time. After weeks of medications, steroids, anti-seizure drugs and vitamins, he’s bounced back from the hellish week in hospital. After previously losing the ability to smile, laugh and cry - a key symptom of Leigh’s - he’s regained these skills and is currently thriving.
With each day that passes and every bit of progress our boy makes, we continue to celebrate the small wins and feel grateful every day to have him in our lives.
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We’re now over three months on from diagnosis and around the time that I (Felix’s mummy Jess), would have been thinking about returning to work from mat leave.
Although doing brilliantly Felix does have clear developmental delays in certain areas, he is around 2 months behind for his age. He cannot sit unsupported, crawl or stand, his co-ordination and strength are behind. He takes drugs every day that we administer orally (a frightful task). His seizures are currently under control but that could change at any time. We’re constantly taking him for medical appointments, check-ups and tests, which has become a full-time job.
As many of you will know, I (Jess) have been proudly working as a freelance TV Producer for the last 15 years - this has been a huge part of my life and great passion. Work is now absolutely on pause so I can give full time care to Felix. This is a huge change and one that we could not have prepared for as a family. For me this comes with a huge vulnerability, not only putting aside a big part of who I am but also losing my financial independence that I’ve worked so hard to achieve.
With some hesitation from us, but much encouragement from many we’ve set up this page… Firstly to raise awareness for our boy and secondly for anyone who might want to help support our family in any small way, whilst we navigate this very unfortunate hand we’ve been dealt.
We want to give our little boy the best life possible, for as long as he is with us. Alongside the wish to do as many fun and fabulous things with Felix, we also just need to get our feet back on the ground.
If you’ve got this far - thank you for reading. Life is so very precious so hold onto your loved ones, live for the moment, be kind and don’t sweat the small stuff, that’s what we are trying to do.
Jess, Joe and Felix.
**For further info on mitochondrial diseases and to recognise a charity that have been an incredible support to us already please visit: