20 Feb

Colby

Colby was diagnosed with Koolen-de Vries Syndrome in 2007. He makes friends with everyone he meets and makes his family so proud!

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20 Feb

Matt

Twenty-one year old Matt lives in the UK and is diagnosed with Koolen-de Vries Syndrome. He is funny, sensitive and caring with a passion for musical theatre, Xbox and Chelsea football club.

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20 Feb

Emma Leann Kuenz

Emma was diagnosed with the KANSL1 mutation and received the Koolen-de Vries Syndrome diagnosis in 2013. She wakes up every morning with a smile on her face and ready to face the day.

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20 Feb

Daniel Henry Green

Daniel, diagnosed in 2012, has an amazing sense of humor, a great smile and an infectious belly laugh!

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20 Feb

Ella

Ella battles many health issues but her joy and love radiate to all those around her. She is a friend to all who know her.

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20 Feb

Gracie June

Grace is adored by her parents and her older brothers. She is a heart warrior, a tubie and beautifully Kool!

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20 Feb

Nicholas Hallock

Diagnosed with Koolen-de Vries Syndrome at 18 years old, Nicholas loves singing and dancing, swimming, bike riding and loving everyone around him.

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19 Feb

Alyssa de Jong

Alyssa, who was diagnosed with Koolen-de Vries Syndrome in 2013, is a Stage 3a pediatric melanoma survivor.

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