SMILES INCLUDED: EPISODE 2
Emily Gerst is the mom to Cecilia, an 8-year-old girl with Skraban-Deardorff Syndrome. We had a great conversation about the impact of getting the diagnosis and what it has meant for our children. Emily shared stories about Cecilia that highlighted the personality of the little girl behind the diagnosis and I shared some similar stories about Joe.
We are just two rare mamas raising our kids as best we can and sharing some advice…and hopefully some inspiration…for other parents going through similar experiences. Cecilia even tells us a joke in this podcast!
If you are diagnosed with Skraban-Deardorff Syndrome or you are the caregiver of a person with Skraban-Deardorff Syndrome, please connect with us! Our community can currently be found on Facebook at “WDR26-Related Diagnoses”. You will need to request to join our private group - we will be happy to support you and your family.
Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.