Today’s guest is Erin Prosser, an IEP expert consultant and a mom of a daughter diagnosed with STXBP1. "You don't see it coming. Being a rare disease parent hits you like a ton of bricks." In today's episode Katie Taylor had the chance to speak with Erin Prosser, an...
Episode 1 | Kelli’s Story – A daughter with Goldenhar and Caudal Regression Syndrome
Podcast Show Notes
After a long pregnancy on hospitalized bedrest, Kelli describes the birth and first year of her twin girls, one of which was born with two genetic conditions, Caudal Regression Syndrome and Goldenhar Syndrome. The journey to diagnose these conditions was a long one, and Kelli talks about what that process was like, and what is like to have a child with these two syndromes.
Kelli recommends a several resources, www.isacra.com and the Goldenhar Syndrome Facebook group.
Kelli also recommends rarediseases.org’s network for a community of support and information on Goldenhar syndrome.
If you would like to connect with Kelli personally, you can follow her on instagram at @kelita83, on her blog at www.babygruens.wordpress.com and at Austin Moms Blog.
If you would like to share your story or have questions about this podcast, you can email childlifeoncall@gmail.com or submit your information on childlifepodcast.com.
You Might Also Like…
216: How to talk with Kids about Child Abuse – Jane’s Story [Repost]
April is Child Abuse Prevention Awareness Month. We have reposted this episode to bring awareness and give you tangible tools to speak with your kids about child abuse. Today’s guest expert is Jane Donovan, who is a child abuse prevention advocate. "And like we say in...
215: Ruptured Appendix: Emergent Surgery, 6 Days in the Hospital & Struggles to Discharge
"I've learned so much in this whole process. It's like you have a depth inside of you that resurrects as an advocate and high alert, and it lives inside of you when you need it." -Aspen, Willa's Mom In this episode of Child Life On Call, host Katie Taylor and guest...
