Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
Charlotte has a diagnosis!
Send us a text, we want to hear from you!
After six years of living in what co-host Emily Whiting calls the no man’s land of rare undiagnosed disease, her daughter Charlotte has finally received an overarching diagnosis that explains her medical anomalies.
In today’s episode, Emily reveals that diagnosis and the wild journey that led to the genetic anomaly discovery. She openly discusses the challenges of living with an ultra-rare undiagnosed disease, the pros and cons of having a diagnosis, and what it might mean for Charlotte’s future.
Emily begins the discussion of how Charlotte has no ‘medical home’ where her care is proactively managed, and the care gaps despite having more than 20 specialists involved.
Join Emily to dream about how Charlotte’s journey can positively impact and improve the world of pediatric complex care, of living with a rare and undiagnosed disease, and, of how Charlotte’s Hope Foundation could one day unite the nine current families known to have the same syndrome as Charlotte (and maybe even more as they continue to be discovered).
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us 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:
https://parentempowermentnetwork.org
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Join the Parent Empowerment Network Community of Hope
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
