Rarely Normal

Morgan and Ryan joined us in the studio to share their daughter's experience with Spinocerebellar Ataxia Type 5 (SCA5). Mighty Madilynn's rare disease is not slowing her down - we talk about her care, parenting, her relationship with her brother, and patient advocacy. They're also raising funds to build an accessible playground at Madilynn's school - donate here https://wingateplay...

[Trigger warning for expecting moms] We're so grateful to have Andrea in the studio this week to talk about her daughter Emery and her experience with her stillbirth. Andrea's perspective on loss, love, and her ability to continue to celebrate Emery's life is nothing short of awe-inspiring. Her daughter, Emery Grace has taught her the power of grief and is inspiring Andrea's approa...

Excited to have Ashley in the studio to help us discuss different forms of anxiety and unpack solutions. From cognitive restructuring to the power of journaling and identifying patterns, we loved this open and authentic episode Buy the Journal: https://a.co/d/0akrFLSU Website: https://fourprogress.com/

Adult diagnoses are often not discussed, which is exactly why our conversation with Amy is so critical. She wasn't diagnosed with ADHD until adulthood (thanks to her determination!) and not until she became a mom, that she was diagnosed with OCD. We hope this episodes inspires others to seek medical testing and intervention, no matter the age! Check out her blogs: Facebook page:  https://www.f...

We couldn't be more grateful to Kelsey for sharing her daughter Stella with us. She's fearless and strong, beyond measure. Her work in the Courageous Parents Network is paying it forward to other parents and families dealing with child loss and we're honored to have her join the podcast and share her perspective on love and loss. https://courageousparentsnetwork.org/

We're beyond grateful to Lolita for sharing her son Michael's journey with ALD. From discovery to treatment, to his day-to-day care, we're in awe her of love and compassion for others. We even love how his sisters are getting into the medical field - inspired my Michael. https://www.aldalliance.org/ https://www.hopkinsmedicine.org/health/conditions-and-diseases/adrenoleukodystrophy

What a treat for our listeners, to have Dr. Ryan in the studio. Her work with medically complex children, providing support for patients, but also the whole family, via her caregiver coaching. Her work fills a much needed gap in the community and her commitment is infectious. https://www.foundationfirstpt.com

Saddie Baddies unite! This week, we talk about all the facets of grief with Jasmine, who started her grief journey after the death of her father. This open and vulnerable conversation shows how universal grief is, how important it is to find a tribe, and how critical is to 'feel the feels.'

This week, Kim Bradley shares her journey being a rare disease mom. Her daughter Laelynn (which is means 'flower of hope'), has faced 100's of surgeries and continues to shine a light of love. We discuss everything from Laelynn's day-to-day care, parenting a big family, PCA (patient care assistant) and the need for rare disease parents to rely on their tribe!

We're honored to welcome Shawna to the studio this week to talk about her son Keenan and his journey with Microcephaly Capillary Malformation Syndrome. From seizers to surgeries and seeing specialists in two states, their strength is palpable. Now Shawna is paying it forward by creating counseling and support for bereaved parents with Keenan's Caring Konnections and raising money for epile...

What a pleasure it was this week, to connect with Ashley about her connection to loss. Her ability to apply experiences being a Reiki Master, reading tarot cards, working in hospice, and studying astrology and signs, means she has an incredibly interesting POV on life, dealth, and everything in between. Check her out at ashleypagehealing.com

November is Pancreatic Cancer Awareness month. It's considered a rare cancer, since about 3% of all new cancer diagnoses are Pancreatic but it's become a significant public health issue because it is the eighth leading cause of cancer death. We welcome Kate McKenna to the studio to shed light on a cancer that's impacted multiple members of her family. She shared her grief journey, expe...

We're honored to have Amy Butterworth in the studio this week to talk about her daughter Cindy Sue. It's a emotional ride and we're grateful for Amy's vulnerability and authenticity.

This week we reconnected as co-hosts to celebrate and discuss Lindsay's grief coaching certificate. She's 9 years into her grief journey, after the loss of her son Quinlan to an exceedingly rare disease (BRAT1) and we discuss where we in now, look back at the first year of grief, and discuss how this certificate will support in the future of our journey. https://lovequinlan.com/

This week, we are honored to mark Breast Cancer Awareness month by connecting with April Goodman. Now 5 years in remission, her journey was fast and furious and she shared her experience with diagnosis, treatment, and juggling a busy family and job. She's a true warrior with wise advice for anyone facing a similar diagnosis. Breast Cancer Research Foundation: https://give.bcrf.org/ Runway for...

The power of positivity and came through in spades this week. We welcomed Tennille this studio this week to connect with her about her son Jett and his rare brain condition Pontocerebellar Hypoplasia (PCH). Her commitment to giving him the best quality of life, paying it forward, and living a life he'd be proud of, we were so inspired by Tennille. - Learn more about PCH here: https://raredisea...

What a special guest and impactful episode - we're thrilled to connect with Emily this week about her daughter Cora. Her story is one that had to be told! From her path to motherhood, to the impossible decisions she had to make, planning a memorial and carrying on Cora's life and legacy in a way that's special to her and her family...to then face impossible decisions with her second ch...

We couldn't be more grateful for such a powerful conversation with Kristen Carrier. Her daughter August was born congenital diaphragmatic hernia (CDH) - unknown to her and her husband - and passed away shortly after birth. Her ability to pay-it-forward by leading with kindness and vulnerability, left an indelible impression. She had incredible advice for other grieving parents and is raising h...

We welcome Monica to the studio this week who shares not only her story with child loss and infertility but her commitment to women's health by founding Rhea Community. Her mission is to empower women to step into their reproductive power. By creating a safe space for women to share their stories, she's helping normalize conversations around pregnancy loss and infertility.

We welcome Kristi and her daughter Stella in the studio this week to talk about her son (and brother) Trey who has CACNA1A. CACNA1A is located on the 19th chromosome and it plays a crucial role in the brain by encoding a protein that forms calcium channels. This dynamic duo is creating waves by advocating for disabilities and rare disease!

Our 50th episode, welcomes Tricia Rogers to the studio. Her son Chase has lived with severe food allergies, since birth. We discuss how she navigated it as a first time new mom, and how she manages it as he grows. Her tips and tricks are incredibly helpful for any parent facing childhood allergies!

We're honored to speak to Dr. David Fogelman this week - a physiatrist at Boston Children's Hospital. His perspective on patient care and finding a voice for those who are seeking advice and support, left us in awe. He's truly found his joy in pediatric medicine.

We welcome another BRAT1 mom to the studio this week - Core Eaton. The journey she experienced with her daughter Selah was profound and her message of love and light is one to be shared and celebrated. As she pays it forward with Selah's garden, we hope her message of positivity leaves a lasting impact.

This week, we welcome Sofie to the studio. A mom who found Lindsay while trying to make sense of her son Leo's BRAT 1 diagnosis. She shares the story of her son Leo, how she pays that forward with her two daughters and how she's keeping him and his memory alive.

What a pleasure to have Jon and Jenn in the studio this week. We discuss this son Zach, who passed away in November 2021 at the age of 16, of Osteosarcoma, but focus on how they're paying it forward. They've developed Zach's Bridge, a certified 501(c)3 organization, that provides 1:1 peer support for advanced and bereaved pediatric cancer caregivers. They are truly focused on their goal of easing...