Condition: Marfan syndrome
City, State: Medford, OR
Club: Kennedy Elementary School Sparrow Club Service Hours:
Date Adopted: 1/13/2020
Blakely's Story:• Blakely is a sweet and social 2-year-old girl who is full of personality. She is adventurous and eager to try new things. Her most favorite thing of all are penguins.
• Blakely was born with a genetic disorder called Marfan syndrome. This condition affects the connective tissues in the body and tends to make people very tall and thin, with long arms, legs, fingers, and toes.
• Marfan syndrome can also affect the heart, eyes, lungs, spine, and joints. When Blakely was 6-months-old she was diagnosed with an enlarged aorta.
• Blakely must take daily heart medication to reduce her blood pressure and keep her aorta from growing too rapidly.
• Blakely also suffers with astigmatism in both eyes as well as other eye complications. Her spine is closely monitored for a slight curve, and she will most likely have knee issues as she gets older.
• Blakely and her father share the journey of battling Marfan syndrome. Her father was born with the same condition, making it helpful for Blakely’s family to know what to expect throughout her life.
• Blakely is just a toddler and much of her medical future is uncertain. She travels to Portland often and is required to see many specialists.
• Blakely will be adopted as a Sparrow to Kennedy Elementary School. Kennedy Students will work hard to raise money for Blakely through sponsored community service.