Fiona is mama to Casey, a 2 year old living with Prader-Willi syndrome. She shared with me her birth story and the challenges that arose from some common PWS characteristics. We also talked diagnosis, not looking too far ahead, and the beautiful lessons that can be learned from being the mother to a child born with a genetic condition. I also share a recently written piece called, “This Is Not Political.”
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Fiona is mama to Casey, a 2 year old living with Prader-Willi syndrome. She shared with me her birth story and the challenges that arose from some common PWS characteristics. We also talked diagnosis, not looking too far ahead, and the beautiful lessons that can be learned from being the mother to a child born with a genetic condition. I also share a recently written piece called, “This Is Not Political.”
Ep76: PWS, Siblings, and Family with Jessica Patay
Walking with Freya
32 minutes 55 seconds
4 years ago
Ep76: PWS, Siblings, and Family with Jessica Patay
We Are Brave Together Founder and fellow PWS Mom, Jessica Patay, spoke with me about her family’s experience on the journey with PWS. Her son Ryan is soon to be 18. Jessica shared a bit about what is next for their family and how families might choose to legally approach this milestone. We also spoke a lot about the sibling experience, how our children can be affected by the attention required by our child with PWS and the restrictions on food and kitchen use that can affect the entire family. Jessica also talked about the importance of time for everyone, therapy, and making sure siblings know that they have a voice and need to use it. She has some great advice, learned from experience, for families who are in the earlier stages of their journey with PWS.
Jessica is an important advocate for mothers, and I would say for siblings as well, and really lets us in on some important wisdom. She is open with her story and empathetic to other’s experiences. It’s always such a pleasure to speak with her. You can hear more of her on her own podcast, Brave Together Podcast.
Walking with Freya
Fiona is mama to Casey, a 2 year old living with Prader-Willi syndrome. She shared with me her birth story and the challenges that arose from some common PWS characteristics. We also talked diagnosis, not looking too far ahead, and the beautiful lessons that can be learned from being the mother to a child born with a genetic condition. I also share a recently written piece called, “This Is Not Political.”
