On Feb. 27 Vicki Purdy of North Manchester, Indiana notified us that she wrote a letter about her son Hayes, who has an extremely rare chromosome disorder, to Governor Mitch Daniels… and he signed a proclamation declaring Feb. 28 Rare Disease Day in Indiana.

Thanks to Lori Ratterman of Fishers, Indiana, who has Chiari Malformation, for also requesting a proclamation in Indiana. Lori will have surgery on April 2, and we wish her well.

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Hayes Purdy is 30 months old, and has a chromosome 6p25.1 deletion and a 7q21.13 duplication. There is NO NAME for it, as he is the only one in the world with this chromosome abnormality!!