Receiving a life-altering diagnosis for your child reshapes everything. In this episode, Emily shares the emotional journey of discovering Charlotte’s rare condition—Hardikar Syndrome, a diagnosis with only nine documented cases worldwide at the time. We reflect on those heart-wrenching days and how hope and support helped Emily & Dan navigate the unknown. A key figure in our story is Dr. Alanna Strong, whose expertise and care have been invaluable.

We explore how using #hardikar on social media led us to a global network of 21 families affected by Hardikar Syndrome. What began as a few online connections has grown into a strong community. Together, we’ve deepened our understanding of the syndrome and doubled the patient population for research initiatives led by Dr. Strong. This episode highlights the power of genetic research and community-driven support.

Navigating a rare medical condition can be isolating, but it also brings moments of hope. We discuss how a diagnosis provides clarity, connection, and access to essential resources. No family should face this journey alone, and we invite listeners to share their stories and connect with us. Together, we can find strength in unity and spread a message of hope and resilience for families facing rare medical challenges.

Hardikar Resources:
1. "Novel Insights into the Phenotypic Spectrum and Pathogenesis of Hardikar Syndrome"

2. Contact Dr. Alanna Strong

3. Private Hardikar Syndrome Support Group - click here to join this group if you are the parent of a child with Hardikar or you have Hardikar

4. Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Imagine discovering that the best medical treatment for your child's rare condition is halfway across the globe. Join us, Ashlyn and Emily, as we recount the incredible journey of Ashlyn's daughter, Emery, who was born with bladder exstrophy. Ashlyn's advocacy journey for Emery led them to a life-changing procedure at Great Ormond Street Hospital in the UK, making Emery the first American to undergo the 20+ year old surgery. This episode of Empowered by Hope underscores the importance of global medical options and the pivotal role of empowered parenting and relentless advocacy in finding the best care for our children.

We detail our efforts to bring the revolutionary Kelly Continence procedure to the US, highlighting Charlotte's Hope collaboration with top surgeons Dr. Imran Mushtaq from London, Dr. Marc LeClair from France, and Dr. PJ Lopez at Rainbow Babies and Children's Hospital in Cleveland, Ohio. Learn about the collective quest to make this life-changing surgery accessible to more families, sparing them the daunting task of traveling abroad. We share highlights from a recent webinar where parents engaged with these world-leading experts, showcasing the power of advocacy in expanding medical horizons.

Navigating the journey of advocating for your child can be overwhelming, but you're not alone. We provide practical advice on trusting your instincts, seeking multiple opinions, and staying informed about new treatments. Our episode emphasizes the strength found in unity and the importance of connecting with others for support. We invite you to subscribe, share your personal journeys, and remember that even on the toughest days, you are doing an exceptional job. Share your story with us at contact@charlotteshopefoundation.org and join our community of empowered parents.

Additional Episode Resources:
Link to Bladder Exstrophy-Kelly Continence Procedure Webinar: https://www.uhhospitals.org/health-talks/articles/2024/09/care-for-children-with-bladder-exstrophy

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Imagine facing the overwhelming task of preparing your child with complex medical needs for school. Emily knows this journey all too well with her daughter Charlotte, and in this heartfelt episode of Empowered by Hope, she shares her invaluable experiences. From dealing with feeding tubes and medications to navigating physical limitations, Emily and Ashlyn provide practical strategies and compassionate insights to help you become a confident advocate for your child within the school system. Learn how to tailor educational experiences that allow your child to grow, develop, and genuinely enjoy their learning journey despite the challenges they face.

We also discuss the critical role of parental advocacy, offering three essential tips that can make a world of difference. Find out how to secure an intervention specialist, leverage the power of parent support groups, and trust your instincts to ensure your child's needs are met effectively. Emily's firsthand advice underscores the importance of speaking up and recognizing that each child's school journey is unique—it's perfectly okay for their path to look different from others. Join us for this supportive and empowering conversation, and don't forget to subscribe, share your stories, and spread the word to those who might benefit from this invaluable guidance.

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please consider leaving a review on your preferred podcast platform. Our goal is to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon