Thank you for visiting my team’s fundraising page! This year we will be raising money for Priscilla. Please read her story below. I hope you will consider supporting us through a donation or becoming a part of our team!

Four-year-old Priscilla loves reading, listening to music and making friends.  She is very smart, silly, sweet, and determined.  She has a strong desire to live a full and independent life so her happiest times are in therapy where she can gain more strength and movements.

Priscilla was born with a rare neuromuscular disease called Nemaline Myopathy (NM), a condition which affects the skeleton muscle in her body from head to toe. It is a congenital disorder with the symptoms of whole body muscle weakness, life-threatening respiratory problems, and swallowing dysfunction.  She also has delayed motor development and weakness in the arms, legs, trunk, throat and face muscles. Actually, every muscle in Priscilla’s body that is attached to a bone is extremely weak which makes even breathing, talking, eating and moving tiring.  She cannot crawl, lift her arms against gravity, or even roll over.  There is no cure but physical therapy is important for prolonging her lifespan.  Without therapy support, she will need more dependent care assistance in her lift.

Priscilla has told her mom that she needs to keep going and never give up her exercise.