Condition: CLN1 version of Batten Disease
City, State: Portland, OR
Club: South Meadows Middle School Sparrow Club Service Hours: 287
Date Adopted: 1/10/2020
Haley's Story:• Haley is a caring and empathetic 10-year-old who is a true inspiration to others. She loves animals, mermaids, unicorns, music and everything princess. She also loves skiing, wake-boarding and just being active.
• Everything was fine, up until she was 8 years old. Her parents knew she was having difficulty with her sight, but they had no idea what the underlying cause was. In October of 2017 she was diagnosed with CLN1 version of Batten Disease.
• Batten Disease CLN1 is a rare inherited disorder of the nervous system. There is no known cure or treatment for this disease that leads to blindness, seizures, loss of motor skills, loss of speech, and dementia. Life expectancy is very short.
• Although Haley has lost her sight, she still water skis, snow skis and roller skates. She has more courage than most adults. She lives each day to the fullest. Haley will struggle as the disease progresses, but she continues to embrace life and the joy in it.
• Haley just wants to be like all little girls enjoying Barbies, American Girl Dolls and friends! She continues to be positive, happy and easy going.
• Haley will be adopted as a Sparrow to South Meadows Middle School. Students will work hard to not only love and support her but raise money for Haley through sponsored community service for daily and medical expenses as she fights for a cure.