Finding cures for children's genetic diseases


Mum runs for two kids


She would never accept the title of “Super Mum’’, but as if caring for two children with a rare genetic disease and educating the public about Jeans for Genes were not enough – now Jessica Gowans is running the City to Surf to fundraise for Children’s Medical Research Institute.

Both Rosie and Henry Gowans have a metabolic condition known as LCHAD Deficiency. Their bodies have difficulty converting fat into energy, and when they run out of energy it can start to destroy their muscles – including their heart. For the past two years, Henry has been one of the faces of Jeans for Genes, and Jess does all she can to support the cause and educate.

“My son has a condition where his body is always fighting for energy,’’ she said.” When he has a metabolic crisis, his muscles can break down as his body uses muscle for energy in a last effort to keep working. The value of muscle breakdown in a typical person is below 200. In marathon runners it can be around 4000. In Henry’s most recent admission, it was 65,000. It’s like his little body ran 16 marathons back to back. So, for my Henry and other children with LCHADD, I will run the City to Surf. I will do my best for them.’’
Being a working mum of two and recently spending a week at hospital with Henry is not easy, but somehow Jess has found the time to train with her City 2 Surf running partners: sister, Cara, and a friend, Kylie, whose children also have a genetic disease.
“Training for City to Surf allows me to process a lot of the mental noise that is a part of everyday stress, and pushing myself physically gives me an outlet. I think so many of us who care for children with complex needs forget to take care of ourselves. Running gives me self-care, physically and emotionally, and keeps me around the people I love, and it’s always a good laugh to look at each other’s red sweaty faces. ‘’

Jess says she’s excited to run through the city streets where Henry’s face was plastered across flags last week for Jeans for Genes.
“I feel like it’s a badge of honour to get out there and extend myself physically for CMRI-Jeans for Genes as a charity runner. Watching my son face so many challenges in his life and overcome them while he’s being a happy, funny, cheeky five-year-old gives me so much context into why representing CMRI-Jeans for Genes is so important.
“I have had moments when I’ve been training when it’s felt too hard, or I’ve been too tired, but then I think of the times Henry’s been critically unwell and I push myself harder. He deserves to just be a kid, and to have the best life, and research into better treatments and cures will hopefully give him that. If you fundraise for CMRI-Jeans for Genes, you fundraise for the 1 in 20 kids like my beautiful Henry who need those better futures.’’
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