Team Greyson is walking to raise awareness and funds for Dup15q

Family and Friends,

Greyson is our SUPER DUPER. She is loving, kind, and brave. At just 6 years old, she has exceeded expectations for life with Dup15q. Greyson has not had any observed seizures and has been off anti-seizure medication since June 2017. She is learning to read, write, ski, swim, and foster genuine friendships with peers.

Greyson is exceptional, but life with Dup15q still impacts our life significantly.

At 10 months old, Greyson was diagnosed with Dup15q Syndrome, a genetic disorder characterized by having an extra copy of a portion of chromosome 15. This syndrome has caused Greyson's diagnoses of epilepsy, hypotonia, global developmental delay, autism spectrum disorder (ASD), ADHD, and anxiety. She has an IEP in school, which provides dedicated para support and multiple therapy and intervention services. At home, she has 13 hours of private ABA and OT therapy each week. She has also attended an incredible intensive therapy camp called Adam’s Camp over the years.

The behaviors associated with her ASD are often trying on our family. Her peers are noticing she’s different and many shy away from her or blankly stare when she’s trying to communicate with them. It breaks our hearts because they don’t understand her, and she just wants to be their friend. She hasn’t had many days at school where she can attend to tasks throughout the day without reports of constant resistance or becoming nonverbal. I observe her peers and see the developmental gap is widening and she’s only 6 years old. We worry what her future will look like, as does any parent, and are thankful to have the resources provided by the Dup15q Alliance and other organizations to guide us through this journey.

In support of Greyson, we, along with other Dup15q families, are hosting a Believe Walk in Denver on September 18th to raise awareness and funds for Dup15q Syndrome. Dup15q is exceptionally rare with only approximately 2,200 known patients in the world. We are walking to support Greyson and all Dup15q families, but especially Declan Holmes. Declan was Greyson’s 6-year-old friend from Adam’s Camp who tragically passed away earlier this year from SUDEP, a known cause of death for children with Dup15q. There will be a dove release at the walk to honor Declan’s life.

All funds raised will go to the Dup15q Alliance who empowers individuals living with Dup15q syndrome and other related rare diseases to reach their full potential by advancing breakthrough research and life-changing therapeutic treatments, supporting families affected by Dup15q, and promoting advocacy.

Will you BELIEVE with us? Here's how:

• Click the Donate button on this page to contribute to the mission of the Dup15q Alliance
• Walk with us! Together, we will walk on September 18th at Clement Park in Littleton. Sign up here: https://app.goodworldnow.com/e/2022-believe-walk-denver (Separate from donation page)

Love, Lauren, Chad, Greyson, Scarlett, and Wesley Polak