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Artwork for The Rare Life

The Rare Life

Madeline Cheney
Parenting
Disability Parenting
Mental Health
Community Support
Grief
Medical Complexities
Family Dynamics
Disability
Rare Diseases
The Rare Life
Parenting a Child With Disabilities
Therapy
Emotional Support
Disabilities
Emotional Well-Being
Friendship
Sticker Club
Epilepsy
Sibling Relationships
Parenting Children With Disabilities

This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney. Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting. Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working... more

PublishesWeeklyEpisodes301Founded6 years ago
Number of ListenersCategories
Kids & FamilyParenting

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Artwork for The Rare Life

Latest Episodes

It’s summer! But when you have a disabled or medically complex kids, this season can bring with it many, many mixed feelings.

Today, we’re digging into all of that: how we feel about summer, what makes summer uniquely hard for our families, and the... more

Season 13 is coming to a close, and this season covered a lot of heavy, but necessary ground.

In this finale episode, Madeline and Alyssa are joined by Caitlyn, a listener and mom to Miles, to look back on the episodes that were the hardest, most im... more

Most of us can’t be with our children 24/7. At some point, we often must hand off care of our children school staff, nurses, therapists, hospitals, family members, etc to help care for our disabled and medically complex kids. And honestly? That can f... more

For many parents of disabled and medically complex children, “raising awareness”, especially on social media, can start to feel like another responsibility sitting on top of an already overwhelming life.

Post more. Educate people. Share your child’... more

Key Facts

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Recent Guests

Joanne Bay-Rachel
Special education professional and disability parent
Episode: 225: Schooling Options for Disabled Kids | Advocacy, Access + Emotional Toll of Navigating Tough Choices w/ Rachel Redmond
Robin Kozerginski
Dad of Brie and Shila, partner to Rachel
Family of Brie and Shila; lives in Toronto
Episode: 220: Robin’s Story | Preparing for the Worst, Staying Present, + Embracing a Different Type of Fatherhood
James Catchpole
Disabled author of What Happened to You
Author/Writer
Episode: 219: How Do I Handle Questions from Strangers About My Disabled Child? w/ Disabled Author James Catchpole (UPDATED)
Kyrie Herman
Mom of two with a rare disease
Speaker and parent advocate
Episode: 218: Moms vs. Dads in the Medical System | Dismissal, Assumptions + the Cost of Not Being Trusted w/ Kyrie Herman
Cindy Reinhard
Mother of Thor, board member
The Rare Life board
Episode: 216: Cindy's Story | Survival Mode, Unexpected Grief + Navigating Inclusion and Accessibility
Ashley Caywood
Parent of a child with a trach and vent, sharing personal experiences
Episode: 211: Trachs & Vents | Fear, Hypervigilance, & Finding a New Normal w/ Ashley Caywood
Abbey Benjamin
A mother and former pediatric nurse navigating the complexities of raising a child with an ultra-rare diagnosis.
Not provided
Episode: 204: Abbey's Story | An Ultra-rare Diagnosis, Shifting perspectives + Holding onto Faith
Roya Malika
A disability parent sharing her journey and insights
Episode: 201: Roya's Story | A Diagnosis Without a Map, Learning to Advocate + the Journey Back to Herself
Kristen Henry
An adoptive mother who navigated infertility and adoption, discovering her daughter has cystic fibrosis
Episode: 199: Adopting a Medically Complex Child w/ Kristen Henry

Hosts

Alyssa Newtile
Co-host of The Rare Life; frequently introduces episodes and engages in conversation with the founder.
Madeline Cheney
Founder and co-host; provides perspective on raising awareness and shares NICU/medical family experiences.

Reviews

5.0 out of 5 stars from 290 ratings
  • A lifeline

    Such a good listen! The topics and interviews are real and relatable. It’s hard to find people who “get” my experience, and this podcast feels like talking with friends. They work hard to include a variety of voices and experiences, and their online (IG) content is thoughtful, inclusive and relatable too.

    Apple Podcasts
    5
    A rare mom
    United States9 months ago
  • A Very Meaningful Podcast

    I found The Rare Life early on in my disability parenting journey, and I’ve committed to listening ever since. Madeline and her team work hard to share stories and address topics that truly make rare families feel less alone. Each episode is created with so much intention and love. I would absolutely recommend! I look forward to listening in for many years to come.

    Apple Podcasts
    5
    ReneeWray
    United States9 months ago
  • Awesome

    As a parent of a child with a disability and medical complexities this podcast meets me right where I am. I enjoy listening and have listened for several years.

    Apple Podcasts
    5
    DuckFaninOregon
    United Statesa year ago
  • Just what I needed

    As a parent of a child with a disability, this podcast has truly saved my sanity! Simply hearing that I am not alone and that what my husband and I go through is an experience shared by so many is extremely comforting. I wish I could meet all of these amazing parents that are shared on this podcast.

    Apple Podcasts
    5
    Jerichokauai
    United Statesa year ago
  • A belonging I longed for

    Thank You Madeline, so much for The Rare Life. Your content touches more people than you may think. I am a mother of a medically complex child, though he does not have a rare diagnosis of any kind. I had a complicated pregnancy and traumatic birth with my son Vincent, who arrived unduly early at 25 weeks gestation. Due to his very early arrival, he has a laundry list of diagnoses. He’s now 17 months and I only recently saw “medically complex child” written in his medical record. Interestingly en... more

    Apple Podcasts
    5
    littlebit322
    United States3 years ago

Listeners Say

Key themes from listener reviews, highlighting what works and what could be improved about the show.

Content is consistently relatable, supportive, and informative for families navigating rare diseases and medical complexities.
The host deliver authentic, compassionate conversations that make disability parenting feel seen and understood.
The show is a trusted resource for advocacy, practical tips, and emotional validation.
Guests bring real-world expertise and lived experience, creating a strong sense of community.

Chart Rankings

How this podcast ranks in the Apple Podcasts, Spotify and YouTube charts.

Talking Points

Recent interactions between the hosts and their guests.

223: Noelle’s Story | A Terminal Diagnosis, Making Decisions Without a Roadmap, + Longterm Advocacy
Q: What is the transplant and what did that do for Logan?
The transplant is a stem cell/bone marrow transplant intended to replace missing enzymes for San Filippo; it carried high risks, including severe immune suppression and infection, and while it helped physically the neurological benefits were uncertain; Logan survived months in hospital and remains alive at 18, with ongoing seizures and gradual cognitive changes.
219: How Do I Handle Questions from Strangers About My Disabled Child? w/ Disabled Author James Catchpole (UPDATED)
Q: What would you say to parents who feel compelled to raise awareness by sharing every detail of their child's medical needs?
He discusses the difference between informing for understanding and oversharing, advocating for thoughtful disclosure that respects the child's privacy and avoids unnecessary 'othering,' while acknowledging that context and relationship matter greatly.
219: How Do I Handle Questions from Strangers About My Disabled Child? w/ Disabled Author James Catchpole (UPDATED)
Q: How have intrusive questions and attention from the public shifted for you over the years, from childhood to adulthood?
James describes a shift from feeling obliged to explain to recognizing that some questions are inappropriate; he emphasizes the evolving balance between sharing, privacy, and protecting his child's dignity, and suggests practical ways to respond that protect boundaries.
213: Deonna’s Story | A Childhood Injury & Stroke + Healing After Sudden Life Changes
Q: What was that like just logistically for your family during that time?
Deonna shares how they navigated the challenges of Allie's medical event, including the logistical difficulties of her husband's job and caring for their son during her hospitalization.
213: Deonna’s Story | A Childhood Injury & Stroke + Healing After Sudden Life Changes
Q: When did you first realize that there was something majorly happening medically with Allie?
Deonna explains that she thought her daughter was healthy until a simple fall led to a sudden and serious medical emergency, changing their lives forever.

Audience Metrics

Listeners, social reach, demographics and more for this podcast.

Listeners per Episode
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Frequently Asked Questions About The Rare Life

What is The Rare Life about and what kind of topics does it cover?

A candid, emotionally resonant show focused on parenting medically complex and disabled children. Across episodes, listeners hear about navigating healthcare systems, education rights, caregiving burnout, and advocacy, all through intimate conversations with parents, caregivers, and professionals. Notable throughlines include NICU experiences, homecare logistics, inclusion and accessibility, and practical strategies for safety, planning, and community building. The format favors vulnerable storytelling balanced with real-world tips, making it a solid resource for families and professionals seeking perspective, validation, and concrete steps they can apply. A standout element is the strong emphasis on community and peer support, with recurri... more

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How many listeners does The Rare Life get?

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What are the audience demographics for The Rare Life?

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How many subscribers and views does The Rare Life have?

To see how many followers or subscribers The Rare Life has on Spotify and other platforms such as Castbox and Podcast Addict, simply upgrade your account. You'll also find viewership figures for their YouTube channel if they have one.

Which podcasts are similar to The Rare Life?

These podcasts share a similar audience with The Rare Life:

1. Thanks For Asking
2. We Can Do Hard Things
3. All There Is with Anderson Cooper
4. Once Upon A Gene
5. Family Secrets

How many episodes of The Rare Life are there?

The Rare Life launched 6 years ago and published 301 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

How do I contact The Rare Life?

Our systems regularly scour the web to find email addresses and social media links for this podcast. We scanned the web and collated all of the contact information that we could find in our podcast database. But in the unlikely event that you can't find what you're looking for, our concierge service lets you request our research team to source better contacts for you.

Where can I see ratings and reviews for The Rare Life?

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What guests have appeared on The Rare Life?

Recent guests on The Rare Life include:

1. Joanne Bay-Rachel
2. Robin Kozerginski
3. James Catchpole
4. Kyrie Herman
5. Cindy Reinhard
6. Ashley Caywood
7. Abbey Benjamin
8. Roya Malika

To view more recent guests and their details, simply upgrade your Rephonic account. You'll also get access to a typical guest profile to help you decide if the show is worth pitching.

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