Confessions of a Rare Disease Mama

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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. 

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

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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/

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

This week I had a wonderful conversation with the fabulous Sabrina Nicole Talerico Miller. Sabrina is a NSCA certified Personal Trainer, a Certified PN1 Nutrition Coach, Wife, Mom, and entrepreneur who specializes in vegan and vegetarian coaching. As a busy mom herself, she sheds some light and shares some tips on how we, as caregivers, can all incorporate small (and very realistic) changes into our daily lives to be the healthiest and happiest versions of ourselves. (And guess what? It doesn't involve spending hours at the gym because let's be real- ain't nobody got time for that- especially us, special needs mamas).  Happy listening!

Sabrina's links:
http://www.bodiesbybrina.com/
Follow her on instagram: https://www.instagram.com/bodies.by.brina/

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/

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

Join me this week as I give some updates on where we are in the process of getting the second medication we so desperately need for our kids, knowing when to call in the "big wigs" and the importance of celebrating every single little inch-stone our children make!

https://www.confessionsofararediseasemama.com/

https://www.saveromanandstella.com/

Follow on instagram: @confessionsofararediseasemama

I'm in TikTok now! @rare_mama

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

You guys. I'm so excited to share this beautiful conversation with you this week.

Nadia is the definition of a true super mom.  After giving birth to two healthy children, she had her third child, Zayn, who was diagnosed with Niemann Pick Disease Type C. After dealing with the devastating diagnosis and then loss of her beautiful boy at age 4, she gave birth to another precious son, Rayyan, who was later diagnosed with a completely different rare and life limiting disease than his late brother.  Join us as we discuss what it's like having two children diagnosed with two different rare diseases, the heartache of losing a child (while 5 months pregnant), surviving a heart attack at a very young age, and so much more. Nadia is hands down, one of the strongest Momma's I have ever had the pleasure of speaking with and a TRUE rare disease warrior mom. I am so inspired by her ability to overcome every obstacle that is sent her way like the true bad ass that she is, all while being an incredible mother, caregiver, and advocate. Oh, and I'm slightly obsessed with her accent :)

SENSITIVITY WARNING for this episode: child loss

What is Niemann Pick Disease Type C?
https://nnpdf.org/niemann-pick-npc/

https://www.confessionsofararediseasemama.com/

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

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

Join me as I recap Roman's big FOURTH birthday celebration! I also look back on how amazing and difficult the past four years of being a mother have been. We have come a long way from where we started and I can say without a doubt that the person who is sitting here typing this is not the same person she was four years ago (in all the best possible ways)! 

Check out the birthday reel I posted in honor of my sweet boy turning four:  https://www.instagram.com/p/CixJmzSLQkl/

If you feel compelled, please donate $4 for Roman's 4th birthday to help fast track treatments for our babies (and all other babies fighting ASMD):  https://www.gofundme.com/f/save-roman-and-stella

As always, thanks for tuning in this week!

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

This week I have my husband, Donald, join me to talk all about our first ever road trip with our two (medically complex) kids. It was quite an adventure and also 100% worth all the stress beforehand! I hope listening to our experience gives all you other medically complex parents the confidence you need to plan that trip you've been thinking about with your family. I promise it will all work out and the memories you make with your little ones will be priceless. 

Also... We were on the news again last week! Check out our latest segment (and past segments) below :)


Watch our news segment's:

Watch Roman throw out the first pitch at a Red's game last year for his 3rd birthday- https://local12.com/news/local/reds-treat-children-living-with-rare-genetic-disorder-to-special-day

Channel 12 LIVE segment from last year- https://local12.com/news/local/local-mother-on-mission-to-raise-awareness-of-rare-disease-cincinnati-asmd

The LATEST channel 12 segment that aired last week- https://local12.com/news/local/local-parents-of-children-with-extremely-rare-disease-receive-fda-approval-for-potentially-cincinnati-loveland-ohio-roman-stella-arnolds-jillian-donald-enzyme-replacement-therapy-experimental-medicine?-fbpost&fbclid=IwAR3PfXoCVjRFGNgbz4jO7RgsuJIS-acMvgvbkn-2rdIPzPHUdKLKIeijqC4

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

This episode I'm catching you up on what's been happening in our week and discussing the importance of learning to let grief and joy co-exist. As summer comes to a close, it's time for kid's to go back to school and cue: all the back to school photos that are smeared all over my instagram & facebook walls. Last year at this time, seeing these photos was a painful reminder that my children WEREN'T going to school. Yet another huge milestone/experience that we were missing out on. Listen in on how I overcame that hump and learned that it's okay to grieve those "normal" milestones we are missing out on with our children, but at the same time have so much joy and gratitude for the experiences we DO get with our kids on this special journey.

Also... BIG NEWS! We found out this week that the FDA has APPROVED the first and only treatment for (the non-nuerological symptoms) ASMD! Read all about it here: https://www.globenewswire.com/news-release/2022/08/31/2507978/0/en/Press-Release-XenpozymeTM-olipudase-alfa-rpcp-approved-by-FDA-as-first-disease-specific-treatment-for-ASMD-non-CNS-manifestations.html

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

I'm baaaaaaaaaack!

I missed you all during my summer break, but I am back at it and super excited to share this episode with you! I'm kicking off the end-of-summer with a wonderful and insightful conversation with rare dad & founder of the incredible mejo App! (If you have a rare or medically complex kiddo, trust me, this app will change your world).  After Ryan's son Reynolds was diagnosed with Costello syndrome at 19 months, he and his wife, Ashley, saw a desperate need for a better way to simplify, organize, and share caregiving information.  And then enter.... MEJO.

Join us as we talk about his journey as a rare parent, life as a stay at home dad, PTSD from his time at the NICU, and just how mejo came to be. 

Sign up for the FREE mejo web app here: https://www.mymejo.com/
Follow mejo on instagram: https://www.instagram.com/my_mejo/
Follow mejo on facebook: https://www.facebook.com/mymejo


Thanks for tuning in this week! As always, if you are loving listening to the show please scroll down and take a moment to rate and review!

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

Welcome to this special BONUS episode!

I recently had an experience with an ignorant comment on social media that I felt like I just had to share. I hope you all enjoy this special bonus episode (there may be a couple more short, bonus episodes before we return fully in August, so stay tuned)!

Watch the surprise video of my mom that went viral HERE (since I recorded this episode, the video is now at 14.4 MILLION views and was featured on the Today Show's Instagram)!

https://www.confessionsofararediseasemama.com/

Resources & Links for this episode:

• Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
• Learn more about our brave warriors: saveromanandstella.com
• Support our family: GoFundMe
• Follow us! 
  • Instagram: @confessionsofararediseasemama
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...