Rare Disease Day 28 February

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On this Wednesday, 28 February everyone at Lollipop Early Learning Centre will be wearing stripes to raise awareness for those fighting rare diseases. Rare Disease Day seeks to raise awareness about rare diseases and their impact on patients' lives.

Those diagnosed with a rare disease make up 1 in 2000 people or less than 0.05% of the population. Lollipop has two rare disease warriors.

Preschool Room Leader, Rhiannen, was born with a form of connective tissue disorder called Ehlers Danlos Syndrome and William Kyburtz, one of our friends in the toddler room was born with Myotonic Muscular Dystrophy. 

Rhiannen’s weakened connective tissue means that no part of her body has been left untouched by the genetic fault. The most prominent aspect of her condition is extreme hypermobility and joints that dislocate multiple times a day due to having ligaments which are not strong enough to hold her joints in place.

William’s muscles have little strength or tone. Without the intervention of physical therapy, his muscles will continue to lose tone and strength but he has been working hard and has recently learnt to pull himself up on furniture and is learning to walk with a walker.

Although they have very different rare diseases, both live life with bodies that have to work so much harder to keep up with everyone else. Rhiannen describes her life with a rare disease as, “living a beautiful life in a broken body”.

To show you care wear “Stripes” on Wednesday. 

Acknowledgement of Country

"Woden Community Service acknowledges the Ngunnawal people as the traditional owners of this land and their continuing connection to land and community. We also acknowledge Aboriginal and Torres Strait Islander peoples who have come from other nations to live on Ngunnawal land. We pay our respects to their cultures, ancestors and elders past, present and future."