​A Mother’s Fight: Quality of Life for Rylee

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​A Mother’s Fight: Quality of Life for Rylee

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My daughter Rylee was born with Walker-Warburg Syndrome, an incredibly rare and terminal condition. It has left her with "Floppy Baby Syndrome," meaning she requires 24/7 specialized care just to breathe and stay comfortable.
​As Rylee’s 1st birthday on April 14th arrives, we are fighting for one thing: peace for our family.
​Caring for Rylee is a 24/7 commitment. My partner is the glue holding us together—managing our household and the logistics of bringing all our daughters together. While Savannah is here at home, Rylee also has a big sister, Leticia, who lives in a separate household. Our priority is ensuring Leticia and Savannah can bond with Rylee and just be sisters while we have the chance.
​We are reaching out for support to provide the complex care Rylee needs, including a floorline safety bed, a tilt-in-space stroller, and a specialized car seat. Your support helps us maintain a stable home where our daughters' lives are defined by love, not just a diagnosis.
​Thank you for helping us cherish every heartbeat.

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Organizer

Jennifer Bouttell
Organizer
Winfield, QLD
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