WS brings with it medical challenges. Rose has a heart defect, SVAS, a kidney condition, a synostosis that fuses the bones of her right arm and limits mobility, and hearing loss.
And sometimes it is more difficult for Rose to learn certain things. She has had hundreds of hours of therapies since she was 4 months old: PT, OT, Speech, and Aqua therapy to name a few.
Through it all, Rose remains joyful, sweet and full of fun! She has taught us so much.
Please watch this short video about Rose’s big year: Rose’s BIG Year
And here is a recent article from The Mighty about Rose: LuckyOn Sunday, May 17, I will again be co-hosting the Wayne Walk for Williams to raise funds for the Williams Syndrome Association (WSA). The Williams Syndrome Association (WSA) is the most comprehensive resource for people and families living with WS as well as doctors, researchers and educators - funding groundbreaking research, hosting camps and conventions, and coordinating regional programming. As a Board of Trustees member, I can personally vouch for this organization’s dedication, efficacy, and broad reach throughout our WS community.
Receiving a diagnosis and learning that your child’s life will be more difficult than expected is devastating. In our time of greatest need, the WSA was there for us with support, information and hope.
Please JOIN US on Sunday, May 17th, (registration/welcome at 9am and walk at 10am), at beautiful Wilson Farm Park, 500 Lee Road, Wayne, PA for a fun morning walk as well as food, live music, a bouncy house, face painting, and more. Please also consider making a donation below to the WSA in honor of Rose - donations here will be considered automatic walk registration.
Much love, Ben, Melissa, Rose and Charlie