Following her Heart


With 50-50 odds that her child may also be diagnosed with Koolen-de Vries Syndrome, England’s Lisa Collins pursued her dream of being a mom.

written by Kate Bradley

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Check out this awesome video of Sam’s involvement as a volunteer for The Friendship Circle of Central Jersey

Sam, who is living with Koolen-de Vries Syndrome, is such an uplifting and inspiring young man! The Friendship Circle is dedicated to creating a supportive community for special needs children, their families and high school volunteers, giving them the opportunity to unearth their potential, make positive life choices, and realize their dreams.

Akron Children’s Hospital tells Miranda’s Story

Kool Kid Miranda’s story was featured on Akron Children’s Hospital’s website, where they discuss their “little fighter” being one of the rarest of the rare.

Van Berg and his mother Eugenia Kim featured in a video series by the Youth Transitions Collaborative.

We are pleased to share the following video featuring Van Berg and his mother, Eugenia Kim. Van is 26 years old and was diagnosed with Koolen-de Vries Syndrome in 2007. This video is part of a video series by the Youth Transitions Collaborative about work-based experiences for people with special needs transitioning to adulthood.


Hayley’s Journey from Special Olympics to Carolina Cup

Check out this inspiring article about Hayley, who has Koolen-de Vries Syndrome and her Paddle boarding journey.

Kool Kid Colby demonstrating his communication device.

Kool Kid Colby Tiberg demonstrates how he used his communication device in the classroom

Kool Katie models in the Runway of Dreams Fashion Show

Check out these photos of Kool Katie modeling in the Runway of Dreams fashion show. Her photo can also be found in the June 13, 2016 issue of People Magazine.

Kool Kid Colby with Western Wishes in People Magazine

Kool Kid, Colby, was featured in a photo shoot for Western Wishes Founder, Donnalyn Quintana that was featured in the June 17, 2013 issue of People Magazine .

Alyssa’s Purple Eagle Day with FedEx

Check out this amazing story about Kool Alyssa. Alyssa had a FedEx Cessna Caravan airplane named in her honor during her Purple Eagle Day.