Emma's Story

Emma was born into this world on a sunny July day. Emma had blue eyes, strawberry blonde hair which hung in curls down her back as she grew older and she was always a tiny little girl. She was so tiny that we nicknamed her our “Little Bit”. Emma loved people and would wrap her little arms around anyone she was fond of. She was diagnosed at age 2 with a rare, genetic disorder called Cockayne Syndrome type II.

Cockayne syndrome is a devastating childhood terminal illness which causes advanced aging symptoms and multiple medical complications, including but not limited to profound growth failure, eyesight and hearing loss, weakened immune system, and feeding difficulties. Emma experienced all of these medical issues during her short life but her brilliant smile never faded and her laughter carried on until she passed away from pneumonia at three ½ years old. She never walked or talked but Emma taught each person who met her about the things that really matter in life; hope, faith, love and family. We never let Cockayne Syndrome debilitate our family and Emma never allowed the syndrome affect her ability to laugh, or experience a full life. It is because of Emma we now give back to families faced with difficult situations. Emma will forever be an inspiration encouraging others to look beyond outward appearances and into the eyes of a child or family who is struggling and encircle that person and family with hope, support and love.

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