Fairy Meadow mum Melissa Bowyer is on a mission to help ease her toddler’s pain.
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Riley, 3, suffers from a rare auto-inflammatory disease called Periodic Fever Syndrome for which there is no cure, and no effective treatment.
Mrs Bowyer and her husband Adam are often forced to stand by helplessly as their son’s temperature skyrockets, and his pain becomes overwhelming.
‘’It causes 40-plus degree fevers, sore throat, swollen neck glands as well as aches and pains in his abdomen, back and legs,’’ Mrs Bowyer said. ‘’This usually happens every two to four weeks, for five to 10 days at a time.
‘’As this illness is rare, it does not attract a lot of funding and research. As a result it is a matter of trialling different medications in an attempt to manage the condition and ease symptoms. So far, we have been unsuccessful.’’
There is hope though, in the form of groundbreaking research being undertaken at the Walter and Eliza Hall Institute of Medical Research in Melbourne. The couple will take Riley, and his six-year-old brother Dylan, on a trip to the institute next month to meet researchers.
Mrs Bowyer has also raised more than $4500 to support the research, through her fundraising page for the Blackmores Sydney Running Festival.
‘’I’ll be doing the nine-kilometre run across the Sydney Harbour Bridge during the festival on September 18,’’ she said. ‘’In giving a voice to the children affected, I am trying to raise awareness as well as funding for medical research.’’
Mrs Bowyer said that increased awareness was vital with very little known about the condition – it took more than 12 months for Riley to receive his diagnosis.
In giving a voice to the children affected, I am trying to raise awareness and funding for medical research.
- Melissa Bowyer
The research is investigating the causes of PFS in order to find a cure, or at least better treatment options.
‘’The variant Riley has is called PFAPA and some kids outgrow it by the time they reach their teens – though some don’t,’’ Mrs Bowyer said.
‘’What we’d really like to see in the meantime is better treatment so that Riley – and other sufferers – can have an improved quality of life.
‘’At the moment Riley has to endure different medications and hospital stays, and he’s missing out on many of the outings other kids enjoy.’’