24 episodes

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.

Confessions of a Rare Disease Mama Jillian Arnold

    • Kids & Family
    • 5.0 • 32 Ratings

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.

    Family planning after a diagnosis with special guest and fellow rare mama, Taylor Sabky

    Family planning after a diagnosis with special guest and fellow rare mama, Taylor Sabky

    My apologies for this episode being a little late- I'm getting over my third (yes, third) illness of the month (when will it end?!)

    This week I sat down with a dear friend of mine, Taylor Sabky, to talk all things IVF and family planning after a diagnosis. Taylor is a teacher and fellow ASMD mama whose brave warrior, Purnell, gained his wings back in 2019. Taylor is someone I have looked up to as a rare mother and sought out guidance from in the early days of Roman & Stella's diagnosis journey. What her and her family has been able to accomplish in regards to treatment advancement for ASMD and fundraising (they raised $750,000 in ONE month-yes, you read that right- ONE MONTH) has been nothing short of incredible. She continues to honor her son's memory by staying very active in the rare disease community and through her advocacy work by sitting on the board of the National Niemann Pick Disease Foundation.

    Taylor tells us about the decision her and her husband made to continue to grow their family via IVF after receiving Nell's diagnosis and what the process was like being pregnant while simultaneously taking care of her medically complex child and all the feels that went along with it.

    Learn more about the National Niemann Pick Disease Foundation and all the amazing work they do here.

    Learn more about Purnell's brave fight with ASMD (otherwise known as Niemann Pick Disease Type A) here.


    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/

    • 1 hr 9 min
    A COVID-style Thanksgiving

    A COVID-style Thanksgiving

    Adenovirus, COVID, RSV.... Will will it end?! Join me as I recap our crazy Thanksgiving week.



    It's #GIVINGTUESDAY! If you are in a giving mood, please check out some foundations that are very near and dear to my heart:

    Donate to Wylder Nation Foundation to help in the fight for my children's lives: 
    https://wyldernation.org/join-the-fight/
    you can also donate through our Go Fund Me:
    https://www.gofundme.com/f/save-roman-and-stella

    Donate to Parental Hope:
    https://parentalhope.org/donate-now/

    Donate to Building Blocks for Kids:
    https://bb4k.org/
    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/

    • 22 min
    Learning when to let go of control (or as my Grandma always said, "que sera sera!")

    Learning when to let go of control (or as my Grandma always said, "que sera sera!")

    I was planning on talking about something totally different this episode and then my husband tested positive for COVID and my plans changed :)

    We have successfully been keeping this dreaded virus out of our house for the past three years.... until now. The thought of our kids getting COVID has haunted us since this mess all began (much like every other parent of medically fragile children). This episode I talk all about how you can only control so much when it comes to your children's health and at a certain point you have to relinquish that control, remind yourself that you've done all you can do to protect your kids and accept that whatever will be, will be!


    #GIVINGTUESDAY is coming up next week and there are a couple foundations that are VERY near and dear to my heart:

    Donate to Wylder Nation Foundation to help in the fight for my children's lives:
    https://wyldernation.org/join-the-fight/donate.html
    you can also donate through our Go Fund Me:
    https://www.gofundme.com/f/save-roman-and-stella

    Donate to Parental Hope:
    https://parentalhope.org/donate-now/



    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/

    • 20 min
    Stepping out of survival mode and putting your best self forward with special guest: podcast host and life coach, Lauren Lowery

    Stepping out of survival mode and putting your best self forward with special guest: podcast host and life coach, Lauren Lowery

    I was so eager to sit down and chat with my special guest this week, the incredible Lauren Lowery. Lauren is a wife, mama to two (one of whom is diagnosed with the ultra rare disease, Aicardi-Goutieres syndrome), ICF certified and trauma-informed life coach for special needs moms, and podcast host of Overcome the Overwhelm. What I love most about Lauren (besides her soothing and cheerful "disney princess-esque" voice) is her ability to get to the root issues of WHY some of us are stuck living in survival mode. Through her 12 week coaching program, she helps other moms get out of survival mode and into a life that is easier, peaceful, and balanced.

    I also share some SUPER exciting news that we received last week!

    Happy listening!

    Learn more about Lauren's 12 week course here.
    Follow Lauren on insgram: @lauren_nia_lowery
    Listen to Overcome the Overwhelm for Special Needs Moms
    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/

    • 51 min
    'Tis the season for colds and flus

    'Tis the season for colds and flus

    Fall is hands down my favorite season- I love the changing leaves, cooler weather & crisp fall air, pumpkin flavored everything and the anticipation of the upcoming holiday season. 

    But you know what I don't love about fall? That's right- the dreaded cold and flu season. Snotty noses and coughing EVERYWHERE. This year seems to be worse than previous ones and our house has finally succumbed  to whatever has been making its way around. This week I tell you all about our unexpected trip to the ER and the importance of speaking up and advocating for your child, should you end up in the hospital with your little one this season too. 
    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/

    • 31 min
    Our BIG news

    Our BIG news

    This week I finally get to share the big news that we have with you all!

    Learn more about Parental Hope and donate to their foundation:
    https://parentalhope.org/
    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/

    • 25 min

Customer Reviews

5.0 out of 5
32 Ratings

32 Ratings

DD-man ,

Well done and so needed

This podcast is such a help to rare disease families like mine. Probably true for anyone facing complex medical care.
The mix of deeply personal struggles combined with advice and tips for those in similar situations is both moving and motivating.

Kova's Mommy ,

Heartfelt and real

I too am a mama to a medically complex child- although he doesn’t have a rare disease. I laugh and cry with you while listening to your episodes. You put words to so many thoughts and feelings that are hard to express to just anyone. Thank you for your honesty and thoughtfulness!

LT4JB2020 ,

Such an amazing advocate

Being a part of Jillian and Donald's journey with Roman and Stella has been so inspirational. They are so freaking strong, I am in awe and so should everyone else. Roman and Stella have amazing parents and this podcast shows the raw emotions of day in a life of Jillian and Donald. #saveromanandstella

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