#saveromanandstella #rarewarrior #rarediseaseparenting #specialneedsparenting #medicallycomplexparenting #rarediseaseawareness #asmd #asmdawareness #disabilityparenting #raremama #specialneedsparenting #raregiver #caregiverparent #niemannpickdisease #caregiversupport
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.
Link to listen in bio!
*Trigger warning for this episode: child loss, stillbirth
#childloss #grief #trauma #pastliferegression #spiritualgrowth #medicalmama #medicallycomplexparenting #hypnotherapy #specialneedsparenting #griefjourney #rarediseaseparenting
https://podcasts.apple.com/us/podcast/confessions-of-a-rare-disease-mama/id1621317686?i=1000639741507
Difference between ASMD and San Filippo syndrome
I get this question asked in my comments a lot, so I figured I’d post an answer instead of responding to each one individually. In short, ASMD and San Filippo are both rare disease and types of lysosomal storage disorders that can cause similar symptoms. My understanding (feel free to correct me if I am wrong!) is that San Filippo syndrome has a longer disease progression than AMSD type A. Most kids with San Filippo can appear completely “healthy” until around age 2-5 when they start losing skills and regressing. The onset of ASMD (type A) symptoms can show as early as 6 months- a year old and the regression is much quicker. Kids with San Filippo can live into their teens, whereas children diagnosed with ASMD type A usually don’t live to their third birthdays. This is why many refer to San Filippo as a childhood dementia whereas ASMD type A is commonly referred to as a “baby Alzheimer’s.” Both are utterly horrendous diseases💔 I truly believe that finding an effective treatment for one can drastically improve the possibility of finding a treatment for the other💪 *DISCLAIMER: I am NOT a medical professional 🙂#asmdawareness #sanfilippo #childhooddementia #babyalzheimers #niemannpickdisease #raredisease #lysosomaldisease #rareparenting #ultrarare #regression #rarediseaseparenting #specialneedaparenting #medicallycomplexparenting
The last one of the most important🤪🍷 #tistheseason😷 #coldandfluseason #medicallycomplexparenting #rarediseaseparenting #christmasdecor #parentreels #wintertime #medicallycomplexkids #rarediseasewarriors #medicalmama #medicalparents
A Daddy’s girl through and through🥹 #daddysgirl #daddysprincess #raregeneticdisease #rarediseaseparenting #dadvocate #daddysprincess #fatherdaughterlove #specialneedsparenting #bedtimeroutine #raredisease #medicallycomplexparenting #specialneedsparenting #rarediseasewarrior #asmdawareness #niemannpickdisease
A lot of people tell us, they “don’t know how we do it,” or that they “could never do what we do.” From the outside looking in, yes, our life does seem unfathomable to most (and I’m not saying that we don’t have incredibly difficult moments), however to us, this is the only life we’ve ever known with our children and we are So. Damn. Grateful for it. ASMD has stolen so much from us, but we will NEVER let the ugliness of this disease affect our ability to see all the blessings and joy in our life.💕 If anything, it has deepened out appreciation for every single little moment. #foodforthought #findyourhappy #caregiversupport #lifelimitingdiagnosis #rarediseaseparenting #rareparenting #medicallycomplexparenting #specialneedsparenting #medicalmama #saveromanandstella #positivity
I was so honored to have been asked to speak at the @wyldernation foundation annual gala this weekend. This is a video of my full speech (with captions) for those who couldn’t be there. I knew I wanted this speech to be about what role HOPE has played in our journey and how even the tiniest little sliver of hope can evolve into REAL change. I also give a summary of some of the remarkable changes we’ve seen in our kid’s since starting this experimental medication. If you feel in your heart to contribute to this amazing foundation, you can find the link to donate in my bio. 💕 #asmdwarriors #rarediseaseadvocate #withhopealways #niemannpickdisease #rarediseaseparenting #scientificpioneers #raregeneticdisorders #rareparenting #ultrarare #saveromanandstella #rarediseaseadvocacy
See ya soon phoenix! ✌️#treatyoself #hairday
Our parenting journeys might be different, but typical child or medically complex child- parenting is tough folks😜 #confessionsofararediseasemama #flyinsolo #parentingreels #rarediseaseparenting #specialneedsparenting
#cincinnatibengals #whodeynation #saveromanandstella #fifthbirthdayvibes #firstbengalsgame #confessionsofararediseasemama #birthdayboy #whodey #rarediseaseawareness #asmdawareness
This week’s episode 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. Link to listen in bio!#confessionsofararediseasemama #medicallycomplexparenting #niemannpickdisease #specialneedsparenting #rarediseaseawareness #rarediseaseadvocate #rarediseaseparenting #asmd #raredisease #advocatelikeamother #rarediseasepodcasts #careteam
