Our Story

Tèa was born in September 2010 with a rare genetic disease called Microcephaly-Capillary Malformations Syndrome (MIC-CAP). It took an entire year of invasive and painful procedures before a diagnosis of the disease could be made. She is the only known Australian with MIC-CAP, and there are no known treatments for her condition. Sadly, the oldest known living child with the condition is ten years old so life with Téa is all about making memories.

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We established The Téa Lake and The Rare Diseases Association to help fund research into the causes behind and treatments for these rare conditions. In WA, you need to have a specific diagnosis to be able to access certain funding. Kids with no diagnosis can fall through the cracks and they may miss out on services. Kids that have high medical needs are the ones that need the funding the most. Téa missed out on a type of funding for a year because she didn’t fit all of the boxes that needed to be ticked. None of the funds raised by the association go towards Téa, everthing is donated to help make a difference.

The Téa Lake and the Rare Disease Association are willing to go further towards helping families of children with rare diseases in Western Australia. We achieve this by linking with therapy services to identify families who have gaps in their child's funding in the purchase of necessary equipment to help accommodate their child's disability.

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She is one of only 13 known people in the world who has the disease. Although diseases like Tèa's are individually rare, collectively they affect more than one in every 17 people. This means that an estimated 1.3 million Australians, including 400,000 children, are living with a rare disease. Approximately 80% of all rare diseases have a genetic basis.

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With your generosity and support, together we can make a difference.