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36: Rare Disease Day 2021, The Parent-Perspective

36: Rare Disease Day 2021, The Parent-Perspective

FromThe Rare Life


36: Rare Disease Day 2021, The Parent-Perspective

FromThe Rare Life

ratings:
Length:
43 minutes
Released:
Feb 28, 2021
Format:
Podcast episode

Description

In this special collaborative Rare Disease Day episode, twelve parents come together to share a little about their children with rare conditions. This is a tribute to all children with rare diseases everywhere, and their parents who love them more than life.
These twelve moms tell us a bit about their child’s diagnosis, what it was like to find out about it, and what they want the world to know about their child.
And its gold.
In their 2-4 minute segments, they capture a variety of perspectives and unique situations, but they all have one thing in common; they love their children profoundly.
Links:
Join the FB group Parents of Children with Rare Conditions: https://www.facebook.com/groups/parentsofrare/permalink/419788272495139/?comment_id=419995795807720&reply_comment_id=420670799073553
FreeArm Tube Feeding Assistant: https://freearmcare.com/
Instagram accounts:
Madeline Cheney, host: @the_rare_life
Eliza +Lorenza: @chargeonwardandupwards
Harper + Morgan: @hustleheartsandhospitals
Beau + Kim: @beaus.journey
William + Bethany: @joyfulblondie
Isaac + Brianna: @brianna.alcox
Freeman + Misti: @freearm.tube.feeding.assistant
Jade + Phylicia: @shortandsweet.pnw
Mauve + Morgan: @mauvevalentina
Released:
Feb 28, 2021
Format:
Podcast episode

Titles in the series (100)

This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney. Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting. Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.