Keen sportsman and 50 year old father of three, Darren’s life changed dramatically when symptoms of mito suddenly presented.
Darren prided himself on his fitness, playing rugby and representing Australia in American Football, so when he had trouble getting out of his chair after eating lunch with his wife and children he quickly dismissed it.
Just four weeks later Darren slipped into a coma.
Finally, after two months and to his family’s great relief, Darren regained consciousness. The next four months were spent at the hospital painstakingly relearning how to walk and talk.
“Eighteen months after experiencing symptoms for the first time, and after my neurologist had run numerous tests, I underwent a painful muscle biopsy. It confirmed mitochondrial myopathy, a type of mitochondrial disease and a condition that we had NEVER heard of before. It was a huge shock to all of us.”
Darren’s immediate thoughts were for his wife and three young children – could his children be affected by this genetic disease? How would he support them if he couldn’t work? And what would happen longer term in the absence of a treatment or cure…?
“I found this to be a very challenging time both physically and mentally. I was quite active prior to becoming ill and I was very frustrated at being bed ridden for such a long time. But I fought against my inner demons and propelled myself forward, never giving up on my journey.
“My diagnosis was a huge shock to myself along with my family. We were only told the name of the condition, and nothing else, so as an ex-investigator with the Queensland Government for 20 odd years, I decided to do some research.
“At first it felt like there was this huge void of information about mito; no one had heard of it and even my GP didn’t understand it. I was desperate to speak with someone who could help and then I discovered the Mito Foundation and the support it offered.
“The first time I called their Helpline, Rebecca [Davis, the Mito Foundation Services Coordinator] reassured me that I wasn’t alone and that she could help me access the information I needed and invited my family to attend a Mito Information Day. That first call had such an impact. The information and support the Mito Foundation provides has made such a big difference to me – and my family.
“Knowing that someone is at the end of the Mito Foundation Helpline is a great comfort. They offer support and information, and advocate for our rights as patients. The Helpline is a lifeline to many people suffering in isolation.
“I was VERY fortunate to attend the Information Day, held at Wesley Hospital, Brisbane which I found VERY informative for not only myself but my mother, grandmother and two aunties who also came along to learn more. I receive the Mito Foundation eNewsletter and services updates, participate in Mito Connect Calls, and visit the Mito Foundation website regularly for updates and resources including, fact sheets, and GP booklets which I distribute to help GPs better understand my condition.
“Mito has caused considerable weakness within my thigh muscles, which I detest as I used to be SO proud of my thigh muscles when playing football. It has also caused droopy eyelids, which I had surgery on in October 2016. The surgery was very successful as I can see now without struggling to keep my eyelids up.
“My two eldest children who are now 12 and nine remember what happened to me, and ALL the time they spent at the hospital. They are constantly at me to come outside and play, or they say ‘I wish I didn’t have a dad who is sick and who could do things with me!’ Hearing them say that tears my heart in two, but I just don’t possess the strength and endurance.
“It breaks my heart when I hear about someone, particularly a child, losing their battle with mito. We desperately need to find a cure or some meaningful treatment to stop more lives being lost.”
Darren Hughes, May 2017