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164: Jillian’s Story | Medical Mom x 2 and the Saying “Someone Always Has It Worse”
Manage episode 436844074 series 3248851
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Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold found herself in after the birth of her daughter, Stella.
In this tender, raw episode, Jillian describes what it was like navigating a surprise pregnancy in the midst of receiving her son Roman’s diagnosis, the gut-wrenching news that her daughter had the same disease, and how the disease has impacted each child in unique ways.
Jillian also shares the way her own mindset has changed, including the way she cherishes every moment she does get to spend with her children.
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!
Links:
Join The Rare Life newsletter and never miss an update!
Fill out the application for our final board seat!
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Listen to Ep 157: Friendships with People Who Don’t Have Disabled Children with Jillian Arnold.
Listen to Madeline’s episode on Confessions of a Rare Disease Mama.
Follow Jillian on Instagram @confessionsofararediseasemama!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
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Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
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