PODCAST · society
Rarely Normal
by Katelyn Nugent and Lindsay Weekes
An exploration of the profound journey of loss, from the enduring power of love, to the unexpected moments of laughter, and everything in between. Join us for candid conversations, led by a child-loss mom and the incredible community that has supported her since day one. We’ll delve deep into the unique perspective and heartfelt advice of caregivers, friends, family, and the child-loss community. Together, we unlock the raw and complex experience of loss through the shared stories of resilience, love, and the healing strength that emerges.
Episodes
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Episode 70: Morgan and Ryan Gaertner | Spinocerebellar Ataxia Type 5 (SCA5)
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…
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Episode 69: Andrea Lessard | Stillborn
[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...
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Episode 68: Ashley Hopkins-Shack | Anxiety
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:...
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Episode 67: Amy Patterson | OCD + ADHD
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...
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Episode 66: Kelsey Stanczyk | Child Loss
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...
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Episode 65: Lolita Jones | ALD (Adrenoleukodystrophy)
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....
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Episode 64: Dr. Paige Ryan | Pediatric Physical Therapist & Caregiver Coach
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....
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Episode 63: Jasmine Newson | Grief
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.'
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Episode 62: Kim Bradley | Type 4 Laryngeal Cleft
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…
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Episode 61: Shawna Wanemacher Camilleri | Microcephaly Capillary Malformation Syndrome
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…
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Episode 60: Ashley Fisher | Spiritual Guide
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...
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Episode 59: Kate McKenna | Pancreatic Cancer
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…
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Episode 58: Amy Butterworth | Child Loss
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.
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Episode 57: Lindsay Weekes | Grief Journey Update
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...
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Episode 56: April Goodman | Breast Cancer
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…
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Episode 55: Tennille Boseman | Pontocerebellar Hypoplasia (PCH)
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…
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Episode 54: Emily O'Sullivan | Zellweger Syndrome
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...
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Episode 53: Kristen Carrier | Child Loss
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,...
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Episode 52: Monica Grippo | Child Loss and Women's Health
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…
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Episode 51: Kristi & Stella Levine | CACNA1A
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...
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Episode 50: Tricia Rogers | Food Allergies
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!
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Episode 49: Dr. David Fogelman | Physiatrist
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.
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Episode 48: Corie Eaton | BRAT1
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...
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Episode 47: Sofie Ellice-Flint | BRAT 1
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.
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Episode 46: Jenn + Jon Wall | Osteosarcoma & Pediatric Cancer
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...
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Episode 45: Dr. Heather Olson | Neurologst
This week welcome Dr. Heather Olson - someone we've wanted to chat with for a long time. She served as the neurologist for Lindsay's son Quinlan when he was being treated at Boston Children's hospital. Her research is in the area of Epilepsy Genetics, including understanding the genetic causes of...
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Episode 44: Jed and Sarah Berger | Autism and Down Syndrome
We couldn't be more honored to have Jed and Sarah in the studio this week. Their son Jonah has Down Syndrome and Autism. This conversation shed light on the love and light of kids like Jonah, while also celebrating the tribe of care committed to supporting their needs.
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Episode 43: Katie Steer | 6q Chromosomal Deletion (14.3-16.1 deletion)
What a pleasure and joy it was to welcome Katie to the studio this week. From her journey to motherhood to caring for her son Cashen who has a deletion of his 6th chromosome, her spirit is incomparable. Her love for Cashen radiates and she's a true inspiration for single mothers and rare disease...
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Episode 42: Kendra Gottsleben | Mucopolysaccharidosis (MPS)
This week we welcomed Kendra to the studio - founder of Rare by Design (a non-profit that works towards creating awareness, inclusion and representation for individuals with a rare disease). Her experience living with MPS (mucopolysaccharidosis) is one that needs to be shared - mainly because of...
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Episode 41: Arianna Wilson | Acute Lymphoblastic Leukemia (ALL)
What a force! This week we welcome Arianna Wilson to the studio, who’s fighting to create awareness for childhood cancer after she lost her identical twin sister Alex to Acute Lymphoblastic Leukemia (ALL) when they were 16. From sharing the power of twin connections to keeping her memory alive…
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Episode 40: Rarely Normal Hosts | Q&A
We're closing out Season 2 and 2024 with a host Q&A. We talk about what we learned this year, the impact of guests, and the importance of sharing 'the hard stuff.' We can't wait to connect again in 2025. Thank you all our guests this year!
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Episode 39: Olivia Mahoney | IVF + adoption
This week, we welcome Olivia Mahoney to the studio, to talk about her journey to motherhood. From years of infertility and IVF to her most recent experience with adoption,. Her emotional journey left us in awe, and her openness to be an outlet for others facing similar situations is allowing her…
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Episode 38: Arley Schaefer | Myasthenia Gravis (MG)
This week, we welcome Arley Schaefer who joins us to talk about her journey with Myasthenia Gravis (MG). It's a chronic autoimmune disease that occurs when the body's immune system produces antibodies that block the communication between nerves and muscles, preventing the muscles from…
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Episode 37: Sarah Woods | Hereditary Hemorrhagic Telangiectasia (HHT)
This week, we welcome Sarah Woods to the studio. We talk about her experience with HHT, a a rare genetic disorder that causes abnormal blood vessel development. What's even more special, is Sarah is paying it forward with her non-profit Serenely Guided Foundation, which focuses on helping guide…
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Episode 36: Rachael Brown | Spinal Muscular Atrophy (SMA)
Rachael Brown joins us in the studio this week to talk about her amazing daughter Kate, and her journey with SMA (Spinal Muscular Atrophy). We discuss her path to diagnosis and her passion for finding treatment and ultimately a cure. And don't forget to check out the Flying Squirrel feeding pump...
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Episode 35: Molly Bice Jackson | Child Loss
What a powerful conversation! This week, we welcomes Molly Bice Jackson to the studio. She shares her daughter Lucy (Lucia) with us. Her message of love and connection is profound. She's a public speaker and author (book releasing in 2025) and her perspective is profoundly powerful!...
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Episode 34: Michelle Fruhschien | Jordan's Syndrome
What a powerhouse mom and rare disease advocate - we are thrilled to welcome Michelle to the studio this week. We talk about her daughter Hailey and her ultra-rare Jordan's disease (which is means it affects less than 1-50K people) as well as the power of 'community' and fight to be seen!...
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Episode 33: Daniel DeFabio | Menkes Disease
We're overjoyed to welcome Daniel DeFabio to the studio this week. We speak about his son Lucas, who had Menkes Disease, and about the stages of grief, paying it forward, the work he's doing on Global Genes and the creating of The Disorder Channel. Menkes Disease letters + numbers: ATP7A...
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Episode 32: Pregnancy, Infant and Child Loss Awareness Day
This week, we take a moment to commemorate Pregnancy, Infant and Child Loss Awareness Day (Oct 15th). We speak about the essence of the day, what it means to the community and discuss what would be Lindsay's son Quinlan's 10th birthday. To to participate in the International Wave of Light, an...
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Episode 31: Jamie Day | Medium
What a fascinating conversation! This week, we welcome Jamie Day to the studio. We leaned all about mediumship and what it's like to 'engage;' with those who have past and discussed how she harnesses her 'gift' to support others on their grief journey. Thank you Jamie for shining a light on the...
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Episode 30: Marissa Curcuru | Autism Spectrum Disorder (ASD)
We welcomed Marissa Curcuru to the studio this week to talk about Autism Spectrum Disorder (ASD) and her experience with her son Nolan. Her perspective is powerful and she's committed to paying it forward by supporting others with their ASD journey, She even writing a children's book to help...
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Episode 29: Marybeth Ellis | Child Loss
This week, we welcome Marybeth Ellis in the studio. Her raw, authentic and loving perspective on child loss is palpable. We're honored she shared her daughter Sidney with us and are in awe of her ability to give back to her community, and be a beacon of hope and love, in her name. #childloss
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Episode 28: Julee Armitage | Nuclear Ribonucleoprotein H2 (HNRNPH2)
What a pleasure to host Julee in the studio this week. We discussed her daughter Remy who has heterogeneous nuclear ribonucleoprotein H2 (HNRNPH2), playgrounds, connection, inclusion, and zebra's.
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Episode 27: Tracy Dixon-Salazar | Lennox-Gastaut Syndrome (LGS)
It was an honor and a pleasure to have Tracy in the studio this week. Not only is she a rare disease parent (her daughter has Lennox-Gastaut Syndrome), but she's the Executive Director of The LGS Foundation, a neuroscientist, geneticist, and patient advocate. We all should be more like Tracey and...
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Episode 26: Keri Cote | Smith-Magenis Syndrome (SMS)
We welcome a unique and special guest this week to the studio. She's a physician but also a parent with child who has a rare disease. Keri comes to talk to us abut her beautiful son Tatum, who has Smith-Magenis Syndrome (SMS). We talk about listening to your gut, finding the right community and...
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Episode 25: Gwen Maesano | Vestibular Schwannoma
What a ride! We welcomed Gwen, a true survivor, to the studio this week to share her journey with a vestibular schwannoma in her brain. What a story of resilience and the power of the human spirit. A good life lesson on learning to listening to your body!
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Episode 24: Kate Manacek | Micro Preemie/Prematurity
Kate Manacek is back in the studio - this time to share her story and journey to motherhood for the second time, with a micro preemie. Her daughter Ellie was born at 27 weeks and spent the first 6 months of her life in the NICU. Ellie has taught Kate, her family and loved ones the power of love,...
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Episode 23: Katie Psoinos | Infertility/IVF
What a journey and special human! This week we welcomed Katie Psoinos to the studio to talk about her decade + long IVF journey. We laughed, we cried, and we learned so much about the power of the human spirit.
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Episode 22: Jillian Arnold | ASMD
We're kicking off Season 2 with Jillian Arnold. It was an honor to have her in the studio sharing her love and life with her two incredible kids - Roman and Stella. Both have ASMD (Acid sphingomyelinase deficiency) and her story is definitely one to share! Her perspective on rare disease is so...
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Episode 21: Bonus!
A massive thank you to the guests and listeners in Season One. In this bonus episode, we answer listener Q&A and share some laugh-out-loud bloopers. Season Two coming in August!
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ABOUT THIS SHOW
An exploration of the profound journey of loss, from the enduring power of love, to the unexpected moments of laughter, and everything in between. Join us for candid conversations, led by a child-loss mom and the incredible community that has supported her since day one. We’ll delve deep into the unique perspective and heartfelt advice of caregivers, friends, family, and the child-loss community. Together, we unlock the raw and complex experience of loss through the shared stories of resilience, love, and the healing strength that emerges.
HOSTED BY
Katelyn Nugent and Lindsay Weekes
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Frequently Asked Questions
How many episodes does Rarely Normal have?
Rarely Normal currently has 70 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is Rarely Normal about?
An exploration of the profound journey of loss, from the enduring power of love, to the unexpected moments of laughter, and everything in between. Join us for candid conversations, led by a child-loss mom and the incredible community that has supported her since day one. We’ll delve deep into the...
How often does Rarely Normal release new episodes?
Rarely Normal has 70 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to Rarely Normal?
You can listen to Rarely Normal on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts Rarely Normal?
Rarely Normal is created and hosted by Katelyn Nugent and Lindsay Weekes.
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