PURA Power: Emberly’s Journey

Hi, my name is Aunt Bev.

I represent family and friends who wish to help raise funds for Emberly, who was diagnosed with PURA syndrome.

An extremely rare genetic neurodevelopment disorder, which is characterized by intellectual, developmental and speech delays, hypotonia, dysphasia, respiratory distress and many other serious health concerns.

Emberly is a fighter. Even through the difficulties she has endured in the early years of her life, she has overcome obstacles that no child should have to go through.

Emberly adores any and all animals, blowing bubbles and spending time in water. Her smile brightens any room she enters, her laughter can lift any spirit and her unconditional love shines through when she meets you for the first time.

Emberly needs all of our support to help raise awareness for this extremely rare syndrome which affects less than 500 people worldwide. With your help, we can provide assistance for the varying therapeutic treatments and equipment that Emberly will require so that she will continue to grow and develop optimally.

Please give to support Emberly and her journey through her beautiful life.