Main fundraiser photo

Wolf-Hirschhorn Syndrome & CDH Awareness Drive

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Our 2 and a half year old daughter (Riley Johnson - she is the big sister in the picture above and the lobster in the photo below) has a rare genetic disease called Wolf-Hirschhorn Syndrome (4p-).   When she was born, Riley had a diaphragmatic hernia- basically a big hole in her diaphragm.  Having the CDH (Congenital Diaphragmatic Hernia)  impeded her lung growth and required multiple surgeries in the first month of her life.  Riley is quite the warrior, and despite her developmental delays, is very happy and healthy today!

April is coincidentally the awareness months for both CDH and Wolf-Hirschhorn Syndrome.   We are passionate as a family about providing opportunities to people with disabilities and there is a wonderful park in our hometown of Beavercreek, Ohio that shares this vision.  Owen's Place is a park designed for children of all ages and abilities to explore, play, and have fun!  We want to raise $3,000 during the month of April to help this park continue providing opportunities to kids like Riley.  The ultimate goal is to build an adaptive baseball field that can be used by all children.  We hope this fundraising drive can help towards the goal of a baseball field where Riley can play one day!

https://www.owensplace.org/


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Donations 

  • Lori Kleinfelder
    • $80 
    • 5 yrs
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Organizer

Andy Johnson
Organizer
Dayton, OH

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