‘How could we go from being perfectly fine … to this?’ The heart-wrenching words of Skelmersdale mum, Lisa Senior whose shock still registers in her voice some 6 years on from the devastating news her family received.

Back in December 2013 Lisa and her husband Darren’s eldest son Callum, then 12, started to have coordination and balance issues which quickly escalated into collapse. Tests led to ‘mitochondrial disease’ being first mentioned and the following August a rare form was confirmed – Neuropathy, Ataxia, and Retinitis Pigmentosa (NARP).

Still reeling from this news, even worse was sadly still to come. The condition was due to a fault in the mitochondria’s own DNA which is passed through the maternal line. Blood was taken for testing from Lisa, from Callum’s younger brother Jack, then 11, and from his sister Maycee, then just 3. Devastatingly, all 4 proved to be affected.

Lisa was impacted less severely than the children which was why her own symptoms of migraine and back problems had never been attributed to the condition previously. It was explained to the family that NARP primarily attacks the nervous system, leading to loss of muscle control, memory problems and heart defects. It not only drastically reduces the quality of life of those who have it but also the life expectancy in the most extreme cases.

Lisa and family dealing with mitochondrial disease

Lisa and Darren could barely believe that there was no treatment, no cure for mitochondrial disease, but sadly it’s a reality that they – and their 3 beautiful children – still have to live with today. ‘To watch your children suffer and be so restricted in what they can do … and for there to be so little you can do, is beyond heart-breaking’ said Lisa. ‘‘We so desperately need research into mitochondrial disease that can help everyone affected by its many variants, including all those which are rare, like ours’.

Read Ben’s story or back to main What is Mito page

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