Tuesday, March 1, 2016

Rare Disease Day

February 29th is Rare Disease Day
So many of the children I work with and adore have rare diseases. I hope today doesn't just increase awareness of those who rare diseases and the need for research into improving their quality of life today and finding treatments and cures in the future but also the potential in each of these amazing individuals. I learn far more for the children I work with than they learn from me. They all have something to offer the world and we all have something to learn.

The children I work with have many syndrome and disorders among them Rett Syndrome, Angelman Syndrome, Cockayne Syndrome, Pitt-Hopkins syndrome, forms of muscular and leukodystrophies, various Mitochondrial Diseases and more recently identified rare genetic disorders with only genetic names CDKL5, GRIN2B, FOXG1 Many of these disorders are life limiting still for many a cure may be on the horizon. Our job as educators is to keep our students ready educationally, emotionally and physically for that cure, whenever it may come. Our jobs are vital, to see in each rare child the potential that is inherent but hidden to many.

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