After a long fight, an 11-year-old Griffith boy has become one of a small minority of those with type 1 diabetes who have the cost of life-saving equipment covered by a government scheme.
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“I don’t mind needles, they don’t hurt at all,” Rylan Mecham said, who when diagnosed with the illness at the age of 8 had to take four insulin injections per day.
Rylan’s blood sugar level often fluctuates to dangerously high or low level. His parents are most worried about this happening while he sleeps – when there’s a high risk they won’t be alerted. This can lead to Dead in Bed Syndrome, which has unnecessarily claimed the lives of other kids.
A continuous glucose monitoring (CSG) device, attached to a child’s stomach, can potentially save his life by setting off an alarm when his blood sugar hits the danger zone.
The problem is that this devise costs between $4000 and $5000 a year to operate, and until recently not a cent was covered by Medicare.
But sustained lobbying by a number of groups has seen the government subsidise CSGs, through the National Diabetes Services Scheme, for a select group of children with type 1 diabetes.
The decision was made just two weeks before Rylan’s 11th birthday – meaning he just scrapped in as being eligible. For children over 11, the criteria is much tougher.
And those over 21 still have to pay the full cost of CSGs.
Rylan now wears the CSG all the time, and doesn’t let it hold him back.
“I keep it on when I’m playing rugby,” the Hanwood public school student said.
The alarm going off can cause panic among those around him, but Rylan doesn’t mind it.
“It means that I get to have jelly beans. I’m not usually allowed to have them.”
A group called the DANII Foundation were instrumental in lobbying the federal government to kick in the $54 million to fund CSG subsidies for children like Rylan.
The foundation was formed in 2012 after the preventable death of 17-year-old Daniella Meads Barlow as the result of Dead in Bed Syndrome. DANII established an Australia wide consumer campaign to make life-saving remote alert technology for type 1 diabetes sufferers affordable.
Those not eligible for subsidies are assisted by the Diabetes Foundation, a volunteer groups that provides financial support for those with type 1 diabetes to pay for life saving equipment. The have helped Rylan’s family.
Rylan’s parents can now sleep a lot better knowing that the CSG, which through wi-fi networks can be connected to their mobiles, is keeping their son safe.
And Rylan can be a lot more positive about his future.
“I’m going to be a cod farmer when I grow up”.
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