Confessions of a Rare Disease Mama

Send us Fan Mail 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,...

Send us Fan Mail 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!  Resources & Links for this episode: Buy Soaring Together : Amazon , Barnes & Noble , or locally...

Send us Fan Mail 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 rai...

Send us Fan Mail 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...

Send us Fan Mail 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 s...

Send us Fan Mail 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 s...

Send us Fan Mail 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! 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:...

Send us Fan Mail 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...

Send us Fan Mail 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.  Resources & Links for this episode: Buy S...

Send us Fan Mail 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 advoc...

Send us Fan Mail 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...

Send us Fan Mail 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 ex...

Send us Fan Mail 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 whil...

Send us Fan Mail 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 to...

Send us Fan Mail 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 r...

Send us Fan Mail 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 time...

Send us Fan Mail 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 amazi...

Send us Fan Mail 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.  Resources & Links for thi...

Send us Fan Mail 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...

Send us Fan Mail 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...

Send us Fan Mail 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...

Send us Fan Mail 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...

Send us Fan Mail 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 c...

Send us Fan Mail 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 hous...

Send us Fan Mail 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: saveromanandste...