Confessions of a Rare Disease Mama  By  cover art

Confessions of a Rare Disease Mama

By: Jillian Arnold
  • Summary

  • Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.

    © 2024 Confessions of a Rare Disease Mama
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Episodes
  • Mission: Inclusion with SLP & inclusive children's book author, Megan Craft
    May 21 2024

    Send us a Text Message.

    Welcome to the podcast, Megan Craft! Megan is a Speech Language Pathologist, wife and mother of two, who saw an unmet need in the community when she kept hearing from parents of her patients that their children were not represented in books. She felt called to do something about it, so she started her children's disability inclusive book series called Mission: Inclusion. Through her series she is working towards expanding diversity of book characters to include children with varying types of disabilities. She draws inspiration for her characters from all the children/adults who she has previously worked with during her SLP career. The theme behind the character stories is to show young children that we are all different and that is what makes us important. It helps readers learn to accept and find commonality with peers to raise awareness and increase the inclusion of their peers in various environments.


    Get a started in the Mission: Inclusion series HERE
    Follow Mission:Inclusion on instagram @mission._.inclusion1622
    Purchase Margo & You on amazon

    https://www.confessionsofararediseasemama.com/

    Learn more about my children's fight with ASMD and donate to our cause:
    https://www.saveromanandstella.com/

    Follow on instagram:
    https://www.instagram.com/confessionsofararediseasemama/


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    48 mins
  • How to get through a long hospital stay & my inpatient must-haves
    May 7 2024

    Send us a Text Message.

    In honor of Roman being home for one whole year from our terrifying 2 month PICU stay, I decided to compile a list of all my must-haves while I am inpatient with my child. I also share other tips for holding onto your sanity while you are in the midst of a long and unexpected hospital stay with your child. Happy listening, yall!

    Shop all my inpatient must-haves below:
    https://www.amazon.com/shop/confessionsofararediseasemama/list/35OEIGSFEA1H4?ref_=aipsflist_aipsfconfessionsofararediseasemama

    https://www.confessionsofararediseasemama.com/

    Learn more about my children's fight with ASMD and donate to our cause:
    https://www.saveromanandstella.com/

    Follow on instagram:
    https://www.instagram.com/confessionsofararediseasemama/


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    40 mins
  • All things TRAVEL with Accessible Adventures Founder, Kristy Cook
    Apr 16 2024

    Send us a Text Message.

    I hope ya'll have a pen and paper to write down ALL the amazing travel tips this week's guest shares with us! Kristy Cook is a mother of four (one who is diagnosed with a rare form of Epilepsy) & the founder of Accessible Adventures. She believes that nature is meant for EVERYONE and is very passionate about accessible travel. This week she shares more about her family, how they got started in all their accessible adventures, and shares so many travel tips for families of medically complex children. Happy listening, friends!


    Learn more about Kristy and her family's travel adventures:
    https://accessibleadventures.net/index.html#/
    Follow them on instagram: @accessible.adventures
    Blog post for most accessible east coast beaches in US:
    https://wonderswithinreach.com/2023/05/most-accessible-beaches/
    $7 Track Chair Google Map:
    https://accessibleadventures.net/product.html#/
    Universal Changing Table map:
    https://www.changingspacescampaign.com/



    https://www.confessionsofararediseasemama.com/

    Learn more about my children's fight with ASMD and donate to our cause:
    https://www.saveromanandstella.com/

    Follow on instagram:
    https://www.instagram.com/confessionsofararediseasemama/


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    1 hr and 23 mins

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