Danii Meads-Barlow was 17 when she was found lifeless in bed by her mother in November 2011.
The syndrome that robbed Danii of her life is called Nocturnal Hypoglycaemia or ‘Dead in Bed Syndrome’ and it is an unknown phenomenon occurring in Type 1 Diabetes sufferers as they sleep. Alarmingly this occurs predominantly in children and young adults and, as Diabetes is the fastest growing childhood disease in Australia, sadly the statistics of this syndrome are increasing also.
Type 1 Diabetes affects 150,000 people in Australia, with 6 new cases diagnosed every day and Australia has one of the highest rates of this condition in the world. When not cared for properly it can have devastating results but in Danii’s case, there was no warning, her last finger prick blood test conducted the night of her death indicated no abnormalities.
A continuous glucose monitoring (CGM) system would have saved her life but at that time, this device was not available in Australia. Today CGM is available, yet sadly impossible for the majority of people to financially afford. This technology provides a complete picture of blood glucose levels and gives early warnings of lows and highs that finger testing cannot always identify and efficiently alerts carers and parents to the problem.
Danii’s legacy was put in place within days of her death. Without hesitation, her parents decided amidst the shock and hellish first stages of parental grief to do everything in their power to prevent more deaths happening in this way by not only raising awareness of this complex Type ONE diabetes condition but to also to raise funds to provide high-risk sufferers with this life-saving CGM technology. To lobby Government for funding of this critical management CGM technology. In the 2016 Election DANII has achieved a Bipartisan commitment to the funding of Continuous Glucose Monitoring. An achievement for the type ONE diabetes community to be proud of. Their Ty1D voice finally being heard.
Danii’s Type 1 Diabetes diagnosis came when she was 5 and her parents swiftly educated themselves extensively in the scary and unpredictable world of juvenile Diabetes. The years that followed were tough for all the family but they managed Danii’s condition with skill and precision. Danii also took care of herself well, she didn’t take risks with her health and she was determined for this affliction not to hold her back.
Danii excelled at school, enjoyed countless hobbies, loved her family and had many friends. Danii was vivacious, beautiful and loved her life.
The Jelly Bean Ball is just one of the many activities and fundraisers hosted by the foundation and this Saturday celebrates the 5th and, just like the others it will be a fun-filled, glamorous extravaganza raising money for this much-needed cause.
The 2016 Jelly Bean Ball is sold out with over 500 guest attending.
Danii’s Story https://www.youtube.com/watch?v=OVLUd3rxcfk
The ABC news website recently stated: Federal Labor will spend almost $80 million to help people with type 1 diabetes access glucose testing technology if elected on July 2.
Labor says it would fully fund the cost of Continuous Glucose Monitoring (CGM) devices for more than 6,000 Australians who have type 1 diabetes.
The funding would be provided to children and young adults up to the age of 21 and people aged 21 and over who have severe hypoglycaemia, or low blood glucose, who have limited awareness of the warning signs of impending hypoglycaemia.
The CGM technology helps people with diabetes monitor their glucose levels through a sensor that connects to an insulin pump.
It provides a complete picture of blood glucose levels and gives early warnings of lows and highs that finger stick testing cannot always identify : ABC News.