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REAL PEOPLE - REAL STORIES

Discover real life stories of individuals and families within our network, and their journey with YWHAG. 

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Giannelli Family

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Meet Gabriele

Gabriele is a beautiful 9-year-old boy with a captivating smile and eyes as blue as the sky. We live in Florence, Italy and when he was born in 2014, when the YWHAG gene had not yet been discovered...

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Dankert Family

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Meet Byron

Byron is our five year old son who currently lives with his parents, two older brothers, and a pet bunny. We are from Wisconsin, in the United States of America. He was born full term and developing appropriately until he had his first seizure at 17 months old. The medical rescue team was called and took us by ambulance to the hospital and that hospital required us to go to a more advanced hospital. That was the beginning of many challenges and heartache to come...

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Poggemeyer
Family

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Meet Luke

Our energetic, passionate, and kind hearted little boy. Luke was diagnosed with YWHAG genetic mutation in 2021...

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Daniel

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Meet Daniel

Almost 14 years ago, we received the most wonderful news: we were going to be parents. We had never experienced such happiness before, and that feeling was only matched when you came into the world....

HELP US MAKE A DIFFERENCE

Help fund research, establish a support community, and create awareness for those affected by the YWHAG genetic mutation. Use the button below to be directed to our campaign through the Rare Village’s 501(c)(3) organization. There you will be able to setup a one time or recurring donation, through our secure giving portal

Thank you for you generous support and for helping us make a difference.

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