Confessions of a Rare Disease Mama: Recent Episodes
Jillian Arnold
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.
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Tune in to this mini episode to learn what my exciting, big announcement is! It's a very special project I've been quietly working on for years & cannot wait to share it with you all!
Donate to Hurricane Helene recovery efforts in NC here
Donate to Hurricane Helene recovery efforts in FL here
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
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Send us a text
In this episode I welcome back (for a repeat appearance!) Director of Community Engagement of Global Genes, Mr. Daniel DeFabio. During our conversation, we dive deep into the many facets of advocacy that we, as rare parents and caregivers deal with. Daniel shares his vast knowledge and experience in the rare disease community and together we break down the eight different types of advocacy that every rare disease parent/caregiver or patient can engage in.
From policy advocacy to school support, Daniel explains how each form of advocacy plays a vital role in making an impact, whether you’re new to advocacy or a seasoned advocate looking to expand your influence. We explore how these various types empower families, patients, and communities to drive change at both a personal and systemic level.
Tune in to gain valuable insights on how you can take actionable steps in your advocacy journey, no matter where you are in your path, and learn more about the incredible work of Global Genes in uniting the global rare disease community.
Daniel's 8 Stages of Advocacy Article
Learn more about Daniel DeFabio
Register for Global Genes Patient Advocacy Summit
Learn how to tell your story
Beginners guide to rare disease
Be sure to follow us on social media and subscribe for more episodes that bring you stories and insights from those who truly understand the rare disease journey.
https://www.confessionsofararediseasemama.com/
Get your FREE Positive Affirmations for the Medical Parent PDF here!
Buy your "Embracing the Rare" T-shirt & other merch!
Learn more about my children's fight with ASMD and donate to our cause
Follow us on instagram!
Send us a text
Enjoy this solo catch-up episode! Some things I bring up during this episode:
-Our kid's starting school (homebound vs. in person)
-Roman's upcoming SIXTH birthday & fundraiser
-Dealing with ignorant comments online
-What quality of life means to me and my children
-Upcoming weekend trip I have planned (without the hubby and kids)!
-How it felt turning 36 this summer and officially entering my SELF LOVE era
Listen to my episode on the Rarely Normal Podcast
Listen to my story episode on the Rare Life
Get your FREE Positive Affirmations for the Medical Parent PDF 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/
Send us a Text Message.
I am back this week with a lovely conversation with the wonderful Jessica Patay, Founder & Executive Director of the non profit We Are Brave Together. In this episode we talk about the importance of respite as a caregiver, her experience as a mother and caregiver to her son, Ryan, who is living with Prader-Willi syndrome, how her non profit came to be, as well as the new anthology they recently released called "Becoming Brave Together," along with so much more. Happy listening, friends!
Buy Becoming Brave Together on amazon
Learn more about We Are Brave Together
Follow them on instagram
Get your FREE Positive Affirmations for the Medical Parent PDF 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/
Send us a Text Message.
For our very belated Father's Day episode I have my favorite baby daddy & life partner on, Donald to recap our incredible week at Disney for Stella's Make-A-Wish trip. We talk about some of our favorite things we did there and share some tips to other medical parents who are considering a MAGICAL trip to Disney. Happy Listening, friends!
Feeling overwhelmed by the challenges of raising a medically complex child? Join me at the upcoming Powerful Medical Parenting Summit! We will explore strategies, resources, and support to help you tackle isolation, uncertainty, and exhaustion. The best part? Registration is FREE! Sign up today!
Get your FREE Positive Affirmations for the Medical Parent PDF 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/
Send us a Text Message.
With the passing of Memorial Day weekend, we get to another anniversary of our D-Day. 5 years since our entire lives were flipped upside down. Join me during this mini solo episode as I share some things I wish I could go back and tell myself at the time of Roman's diagnosis, knowing what I know five years in.
https://www.confessionsofararediseasemama.com/
Learn more about my children's fight with ASMD and donate to our cause:
https://www.saveromanandstella.com/
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https://www.instagram.com/confessionsofararediseasemama/
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/
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/
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#/
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/
There are SO many complex emotions that come along with the question of potentially having more kids- ESPECIALLY if you have one (or in my case, two) that have severe medical needs. There are many pros and cons to weigh and it's something that has been weighing heavy on my heart lately as my husband and I (and our kids) get older. Join me for a good old fashioned solo episode this week as I share my internal struggle with this and what I have come to realize lately.
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/
This week I sit down with founder and host of The Rare Life, Madeline Cheney. She started her podcast in 2020, but the seed was planted 3 years prior—when doctors found troubling results at her 20-week ultrasound that pointed to a rare syndrome during her pregnancy with her second child. She and her husband Juston have two beautiful children, their 7-year-old daughter Wendy, and their now 5-year-old son Kimball. I have been a long time fan of the Rare Life, so I was so excited to talk with Madeline and learn more about her and her family's unique journey. We talk about ALL the things including what is was like during her pregnancy knowing her son had a rare condition, our not so great first encounters with Palliative Care, the family dynamics between a disabled and non disabled siblings, family planning/IVF, and so much more. We also touch on a few of my favorite episodes of The Rare Life which are linked below for you all to check out! Happy listening, ya'll!
https://therarelife.org/
https://www.instagram.com/the_rare_life/?hl=en
https://www.facebook.com/p/The-Rare-Life-Podcast-100039719031110/
Episode 130: Fearful of Child Loss/Anticipatory Grief
Ep. 95: The Parable of the Pain Scale
Ep. 99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins
Ep. 19: The Story of Claire
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/
This week I sit down with the beautiful, wise and talented, Alena Kupchella Gourley. Alena is a Licensed Social Worker, Clinical Hypnotherapist, psychic, medium and spiritual guide, who specializes in hypnotic healing and past life regression.
Alena works with her clients to heal current or past relationship issues, physical, mental or emotional traumas or pain, such as phobias, anxieties, addictions, depression and anxiety, improving sports performance, stress management, weight loss and a positive body and food relationship. Self-Love, Self-Acceptance and Self-Forgiveness is the driving force behind her work. After Roman's diagnosis, I dove into all sorts of different therapies- anything to help me get past all the depression and anxiety I was feeling. My sessions with Alena have been so healing and transformative for me, so I'm so excited to share our conversation with you all.
The way Alena has uses the grief and trauma she has experienced in her life as a way to grow and evolve spiritually and continue to help others heal is so inspiring to me.
*Trigger warning for this episode: child loss, stillbirth
Learn more about Alena and the services offered at http://www.celebrateeverystep.com
Find her podcast at https://celebrateeverystep.com/blog/
You can find more content and community interaction at http://www.facebook.com/celebrateeverystep
And on http://www.instagram.com/celebrateeverystep
Free guided meditation and hypnosis sessions at http://www.youtube.com/user/alenakg
Schedule a free consult call and Find upcoming sessions, classes and courses at
https://celebrateeverystepscheduling.as.me/
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/
It's been a whirlwind month, so I'm catching you all up on what's been going on with us lately during this episode. I also touch on some of the inevitable feelings of jealousy I felt over the holiday and how I was able to move past them. Happy Listening, friends!
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/
This week I have my friend, Brittany Markham, on the podcast to chat all things fundraising! Guys, I am in awe of all that Brittany has been able to accomplish since her son Damian's ASMD diagnosis. She has raised over a million dollars toward research for treatments for ASMD. Over. One. Million. Dollars. As I'm sure you all know, the pressure us rare parents feel to raise money for our children's diagnosis' on top of ALL the other stresses that come along with raising a child living with a rare disease is no joke. This episode we talk about (rare disease) mom guilt, what it's like to witness our kid's regression, how Brittany manages it all, fundraising expectations, and her journey with her son Damian's diagnosis. Happy listening, friends!
Follow along Damian's journey:
https://www.savedamian.com/
Youtube
Instagram
Facebook
TikTok
GoFundMe
Listen to our other episode with fellow ASMD mama, Taylor Sabky: https://podcasts.apple.com/us/podcast/family-planning-after-a-diagnosis-with-special/id1621317686?i=1000589245647
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/
I'm officially a workin' woman again, guys. Okay, well let me clarify- a PAID working woman :)
Join me in this episode as I give some life updates on what we've been up to and the feelings and emotions I have had as I made the decision to go back to work (super part time). Happy listening, friends!
If you feel called to donate to help the innocent children who are being affected in the Gaza and Israel Emergency you can do so HERE.
Donate to the International Red Cross 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/
Have you experienced FOMO as a special needs parent? Of course you have. We all have. In fact, for us, it's a daily struggle. There are SO many more things for us to consider when asked to do something: is it handicap accessible? Will it be too much stimulation and trigger more seizures? How many people will be there? Will they be exposed to too many germs? What if they get sick again and end up back in the hospital? Will there be somewhere where we can change them?
This week I reflect on a couple significant FOMO experiences I have had lately with my kids, how I handled them, and how I refocused that grief into gratitude. Happy listening, friends!
Pre-order your CAREGIVER COMPASS 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/
Has this thought ever crossed your mind as a parent with a life limiting illness or condition? You are not alone. I recently had a listener reach out to me and suggested this as an episode topic (thanks Sara!). She said she has struggled with the thought that somehow her son's terminal diagnosis was her "karmic wake up call" to be a better person and couldn't shake the feeling that maybe some poor choices she made in her 20's led her to this. Am I a believer in karma? Absolutely. HOWEVER, I definitely do NOT think that our children's diagnosis' are just bad karma coming for us. I cannot lie though; the thought did cross my mind at the beginning of our journey. This episode I dive deep into this idea and all my thoughts surrounding it. Enjoy!
Do you have thought's on this topic? Or maybe you have another topic you would love to hear me cover on a future episode? Contact me HERE. I'd love to hear from you!
If you are loving the show, please take a moment to drop a rating and review below!
Learn more about May We Help HERE.
Listen to Jillian's speech about the impact they have had on her family HERE.
Learn more about Visionaries + Voices 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/
Whew! The past few months have been BUSY. I'm going to catch you guys all up on this episode. As always, thanks for joining me on this wild ride. Happy listening, friends!
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/
There was a time, back at the beginning of our children's diagnosis, where we thought traveling was just no longer an option for us. We just didn't see how it was doable to ever go on a vacation with not just one, but two children in wheelchairs (and A LOT of medical equipment). Just the thought of it alone was incredibly overwhelming. As we gear up for our third family road trip with our kids next week, I wanted to share some of my top travel tips with you on ways to decrease your pre-trip anxiety and ensure the smoothest trip possible with your kiddos. Traveling with medically complex kids may take a little more planning for us and strategic packing, but it's definitely doable!
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/
Welcome back! Join me this week as I fill you all in on what's been happening in our life over the past couple months (and why my stress and anxiety has been through the roof lately), the importance of taking care of your mental health as a caregiver parent, and why I decided it was time to start taking my anti-depressants again.
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/
Happy (almost) Father's Day to all you incredible Dad-vocates out there. This week I spoke with one exceptional Father, Daniel DeFabio, that saw the injustice of the rare disease world after his son Lucas, was diagnosed with Menkes Disease and decided to take action. Daniel has made a career out of spreading awareness and honoring his son's memory as a rare disease advocate. He co-founded Disorder, the rare disease film festival, as well as the Disorder Channel, is a writer and blogger in residence for Courageous Parents Network, and is the Director of Community Engagement at Global Genes. I truly appreciated how open, honest, and real he was during our conversation. We talk about everything from diagnosis, stages of grief, his career transition to advocacy, how he's making an impact on the rare disease world, what role hope plays in his life, and so much more. Happy listening, friends!
Daniel's social links:
https://www.facebook.com/rarediseasefilmfestival
https://www.instagram.com/disorderrarediseasefilms/
https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/
https://twitter.com/DisorderRare
Read Daniel's thoughts on hope here.
Learn more about the Disorder Channel here.
Learn more about Global Genes 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/
It's hard to believe that this past weekend has marked FOUR whole years of being on this rare journey. I have been reflecting a lot the past week on how much my life has changed over the past four years and everything I have learned since becoming a rare parent. Join me during on episode as I discuss some of my top take aways of navigating this crazy beautiful life.
Listen to Jillian chat with the ladies of the Nari Nest podcast here: https://podcasts.apple.com/us/podcast/ep-4-self-care-perspective-of-a-rare-disease-mama/id1687855913?i=1000614641791
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/
Are you wondering how you could best support the parent in your life who's child may have just been diagnosed with something life altering or is dealing with a lot of complex medical issues? You are not alone!
This episode I share all the great responses I got from listeners after taking to social media to pose this question as well as sprinkle in some of our own personal experience and what we found to be most helpful when we were stuck in serious survival mode with our kids after receiving their diagnosis'. Feel free to share this episode with any friends or family in your life who want to be there for you, but just don't know what kind of support you need. Happy listening, friends!
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/
I am back from my unexpected break and I am here to catch you all up on what has been happening in our family the past two months. For those of you who are unaware, our son, Roman, just got back home after a 55 day stay at our children's hospital (49 of which were spent in the PICU). He was intubated two times during his hospitalization (yes, two) for a total of 19 days while battling viruses that turned into a viral pneumonia and then developed a bacterial pneumonia which led to a very scary episode of septic shock. This was a pretty emotional episode for me to record, as this whole situation is still pretty fresh so I do want to put a content warning in for those who are triggered by hospitals, ICU, or just have medical trauma in general.
Although this experience was the toughest and scariest that our little family has had to endure, it serves as a good reminder that even during our darkest times, there is always light to be seen if you look close enough. We are overjoyed that Roman is back home now and doing well. It is nothing short of miraculous! Thank you all for bearing with me as we contiunue to settle back in to "normal" life after having everything on pause during Roman's recovery!
Watch our reel of the day we got to bring Roman home!
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/
Welcome back (and happy Valentine's Day)! This week I dive deep into the importance of surrounding yourself (and your child) with the right team of medical professionals. I truly believe that parents and doctors are a collaborative team (especially when it comes to caring for our rare disease/medically complex kiddos) which is why it is VITAL that you are able to work well together. Our children's lives (quite literally) depend on it. Let's get into it!
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/
This week I sat down with Angel Aid Operations Manager and fellow rare mama, Megan Loden. Megan talks all about her experience as a Mom with identical twin girls both living with Familial Cerebral Cavernous Malformations and everything that comes along with it. We discuss career transitions after a diagnosis, the important role social media plays for a rare disease parent, how a rare diagnosis can affect your relationship with your spouse, and finding the humor amongst the heaviness.
Megan is also currently working on the HODA Board of Directors in Operations in her “free” time.
Learn more about ANGEL AID here.
Follow Megan on Facebook, or Instagram and check out her website
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/
Welcome back! This was a BIG week for us... Our baby turned three! Hear all about Stella's birthday recap + my word(s) for 2023: LETTING GO. I want to go into this next year feeling MUCH lighter and this episode I tell you ALL the ways I plan on doing that.
Happy listening, friends!
PS. My apologies for all the background/fumbling around noises during this episode. At times it sounds like I am quite literally wrestling with the mic, so I will be much more conscious of this when I record the next one :)
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/
As 2022 winded down, I compiled a list of our top moments of the year that I share with you in this episode. Looking back on the past year, I realized that we have accomplished a hella-lot as a family and I am taking this moment to reflect on it all. I have high hopes that 2023 will have even more good things in store for us and our babies!
I'd love to hear some of your amazing moments or big accomplishments from the past year! DM me on Instagram @confessionsofararediseasemama or through the contact page on my website to submit some of your most special moments of 2022 and I will read them during the next episode!
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/
My apologies for the late upload! Life has been crazy the past week, as I'm sure it's been for all of you as well- all that holiday madness, right?! This episode I discuss how I handled some triggering feelings of grief and sadness that came over me recently after I found out about the passing of a little girl in the rare disease community.
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/
Welcome back! This week I catch you guys up on what's been going on in our lives over the past seven days (SPOILER ALERT: Roman FINALLY started his experimental med!)
December can be a stressful and VERY busy month for everyone (but most especially us, special needs parents), so I also discuss how our family is making it a priority this month to do plan AND execute some fun and festive activities.
Learn more about A Kid Again: https://akidagain.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/
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/
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/
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/
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/
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/
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/
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/
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/
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
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/
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, Zane, 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, Rayaan, 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 :)
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/
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!
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
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
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!
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/
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/
Have an idea for an episode or a guest in mind that you think I would love to talk to? Contact me here.
DM me on instagram @confessionsofararediseasemama
Learn more about our children's fight with ASMD: https://www.saveromanandstella.com/
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 included an exciting update on where we are at in terms of starting the kid's on their second experimental treatment. We are getting CLOSE!
As always, thanks for tuning in. If you are loving listening, please don't forget to subscribe, rate and review!
Link to sign up for ASMD ACCELERATE study: https://picnichealth.com/asmd-wylder-nation
Learn more about Wylder Nation Foundation: https://wyldernation.org/
https://www.confessionsofararediseasemama.com/
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!
- Brain Dump
- Gratitude Rampage
- Fear Burn
Thanks for listening! Please share this episode with any friends and family that you think may benefit from listening and don't forget to subscribe, rate, and review if you are enjoying this podcast!
Visit my website: https://www.confessionsofararediseasemama.com/
Follow me on instagram: @confessionsofararediseasemama
Donate to help put an end to ASMD
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 enjoying listening, please don't forget to subscribe and rate/review us in Apple Podcasts!
Website: https://www.confessionsofararediseasemama.com/
Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/?hl=en
This episode 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 enjoying listening, please don't forget to subscribe and rate/review us in Apple Podcasts!
Website: https://www.confessionsofararediseasemama.com/
Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/?hl=en
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/
https://rarediseases.org/
https://nnpdf.org/
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 completely present and doting Dad. He also offers advice to fellow special needs Father's who may be just starting out on their journey and the importance of continuing to nurture the emotional connection with your spouse through parenthood.
Hope you enjoy! And Happy Father's Day to all you amazing dads out there!
https://www.confessionsofararediseasemama.com/
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 faced as a couple going through some very trying times with our kid's health and how we ultimately learned just how important it is to continue to invest time in our relationship.
Stay tuned for next week's episode where I (force) Donald to sit down with me and answer all your questions about being the world's raddest Dadvocate!
Have any questions for Donald you would like answered next week? Send them to me here:
https://www.confessionsofararediseasemama.com/contact
Website: https://www.confessionsofararediseasemama.com/
Donate to our cause: https://www.confessionsofararediseasemama.com/donate
Follow me on instagram and facebook: @confessionsofararediseasemama
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 these special moments with my children and making happy memories each holiday.
Please don't forget to leave a review if you are enjoying the episodes! Or even if you're not- constructive criticism is always welcome :)
Have an episode idea? A guest in mind? Just want to connect? Visit the contact page through my website and drop me a line! http://www.confessionsofararediseasemama.com
Learn more about our children's battle with ASMD: http://www.saveromanandstella.com
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 episode:
Learn more about our children's journey with ASMD and fundraising efforts: https://www.saveromanandstella.com/
Learn more about Wylder Nation Foundation: https://wyldernation.org/
Donate to our cause: https://gofund.me/58005e69
Welcome to my very first episode! Everyone in this wild world of rare disease has a diagnosis story and this is ours.