Cicily's Adventures: Photo Album

Monday, April 23, 2007

Photo Album - 2 months old

Christmas Morning -Cicily's holding her new doll from Santa Clause

Double Snell Family on Christmas Day

Cute outfit and her old Starkey brand bone conduction hearing aids. The "yucky old clunkers" as we call them!

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About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.