#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
