Confessions of a Rare Disease Mama

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 realisti...

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: @con...

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 preciou...

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 birth...

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...

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 p...

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&apos...

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,...

Send us Fan Mail Thanks for tuning in to our 10th episode- we finally made it to the double digits! Confessions of a Rare Disease Mama will be taking a "summer break" for a few weeks and returning in August with some bad ass guests! Stay tuned. If you are loving this podcast and feel called to do so, please scroll down and rate/review us! https://www.confessionsofararediseasemama.com/ Ha...

Send us Fan Mail This has been a wild week! Surprise party, car accident (don't worry- we are all okay!), tornadoes, basement flooding, etc. I contemplated skipping doing an episode this week since I have barely had time to sit down and collect my thoughts, but I hate to leave you all hanging for a week :) This episode is just a life update on our crazy week/stream of consciousness. I also in...

Send us Fan Mail This episode I talk about three of the 5 minute journaling techniques I do to help "declutter my brain" when I'm feeling overwhelmed and stressed. I challenge you all to try one and let me know how you feel afterwards! 1. Brain Dump 2. Gratitude Rampage 3. Fear Burn Thanks for listening! Please share this episode with any friends and family that you think may benefi...

Send us Fan Mail This week I talk about the importance of not settling when it comes to putting your child's perfect care team together and how to (kindly) cut ties with a therapist or doctor who is no longer serving or supporting your child in the way they need. Bottom line: NEVER feel guilty about wanting to explore other options until you get the right fit for your child. If you are enjoyi...

Send us Fan Mail This week I discuss how to make connections and utilize every resource available to you as a rare disease parent (and there are many!) to help your children thrive.  A must listen for any parents at the start of a new diagnosis not knowing where to turn first. https://www.sanofi.com/en/media-room/press-releases/2022/2022-02-09-17-00-00-2382138 https://wyldernation.org/resources/ h...

Send us Fan Mail We don't hear from dads enough. So in honor of Father's Day coming up, I had my better half and Dadvocate-extraordinaire on this week as my very first guest. Donald talks all about the struggle of finding the balance being the sole provider for our family and working full time outside of the home at a demanding job while still finding ways to continue to woo me and be a...

Send us Fan Mail I'm not going to lie- I never, ever thought that my husband and I would EVER end up in therapy together. But then again I also never, ever thought that we would be the parents of two children living with an ultra rare genetic disease too. Life throws you curve balls. Shit happens. Marriage isn't always easy. This episode I get candid about some of the issues Donald and I...

Send us Fan Mail Welcome back for the second episode of Confessions of a Rare Disease Mama! This week I wanted to dive a little deeper into our treatment journey for our kids, the importance of following our "parental instincts," and how all of us mom's have a secret power deep within to GET. SHIT. DONE. Even when the odd's are stacked against us.  Links for today's episod...

Send us Fan Mail I always tend to get into a weird funk/depression immediately following any major holidays or celebrations. Easter was no exception this year. The older my kids get, the more I am reminded that our holidays will look much different than we had always imagined them. This episode I share the tactic I have used to help combat those feelings and not let them get in the way of enjoying...

Send us Fan Mail Welcome to my very first episode! Everyone in this wild world of rare disease has a diagnosis story and this is ours. Learn more about my children's fight for their lives: http://www.saveromanandstella.com http://confessionsofararediseasemama.com Resources & Links for this episode: Buy Soaring Together : Amazon , Barnes & Noble , or locally at Bike Trail Books in Love...