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Artwork for The Rare Life

The Rare Life

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

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

PublishesWeeklyEpisodes309Founded6 years ago
Number of ListenersCategories
ParentingKids & Family

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Artwork for The Rare Life

Latest Episodes

Imagine this: You’ve just finished going through the diagnostic process for your child’s rare disease. You’re trying to find your new normal. And in the midst of all this, you continue to uncover your own medical complexities.

That story isn’t fore... more

Parenting a medically complex child without a partner or co-parent can bring a new level of difficulty.

From managing the financial realities of a solo parent household to the emotional weight of making all the decisions on your own to the uncertai... more

As parents taking care of disabled and medically complex kids, we could probably use a little more help and support than the average person... But that doesn’t make it easy to ask for it.

From guilt to societal pressure to simply not having anyone y... more

As our disabled and medically complex children grow and mature, caring for and navigating their sexual health can be a tricky topic.

From appropriately navigating sexual activity, consent, basic hygiene and even more complicated topics like birth c... more

Key Facts

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Contact Information
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Number of Listeners
Find out how many people listen to this podcast per episode and each month.

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Recent Guests

Carrie Harbath
Mom to Sloan, medical traveler with disabled child, frequent guest on travel adaptations
Individual episode guest (The Rare Life)
Episode: Traveling with Disabled Kids Tips and Tricks (Summer Mini #3)
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
Madeline Cheney
Guest sharing personal NICU experience and co-hosting the episode
The Rare Life
Episode: 217: The NICU Experience | The Shock, Fear, and Emotional Rollercoaster of Navigating the Unknown w/ Madeline
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

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 292 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 Statesa year 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 Statesa year 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.

Single Medical Parenting w/ Danielle (Summer Mini #8)
Q: How has being a solo parent affected career and income, and how have employers responded?
She explains starting with remote work, stepping away during hospitalization, and then returning to fully remote roles with supportive employers who understand the need to balance work with caregiving.
Single Medical Parenting w/ Danielle (Summer Mini #8)
Q: What do you see as the biggest differences from peers who have two parents in the home?
Danielle notes the reliance on a strict routine for medications, the unpredictability of day-to-day illnesses due to immunocompromised status, and the significant travel and caregiving demands that set solo parents apart.
Sexual Health for Disabled Youth w/ Jill Arneson & Amanda Griffith-Atkins (Summer Mini #6)
Q: How should parents approach the possibility of medical interventions like hysterectomy in a disabled child?
Treat it as a medical decision focused on the child's health and quality of life, involving the medical team and ethics oversight, and balance the potential benefits against risks and the child's long-term well-being.
Sexual Health for Disabled Youth w/ Jill Arneson & Amanda Griffith-Atkins (Summer Mini #6)
Q: What are the initial considerations parents should have when addressing puberty in a child with significant disabilities?
Start by understanding the child's unique medical and cognitive profile, discuss safety and privacy, and tailor conversations to their communication abilities, using simple, clear terms and ongoing dialogue with caregivers.
The Forgotten Fathers | To The Dads Who Hold It All Together w/ Lizzie (Summer Mini #2)
Q: Can you share a little bit about your process in writing this poem and how the idea started long before Wally's passing?
The idea sat with me for nearly a year, observing how dads carried the fear and logistics at home while moms were often supported publicly; I started drafting a month before Wally passed, realizing I couldn't navigate it alone and that the poem needed to honor the unseen labor of fathers.

Audience Metrics

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

Listeners per Episode
Gender Skew
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Interests
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Age Range
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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. Raising Disabled
2. Laugh Lines with Kim & Penn Holderness
3. Thanks For Asking
4. 3 in 30 Takeaways for Moms
5. Going West: True Crime

How many episodes of The Rare Life are there?

The Rare Life launched 6 years ago and published 309 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. Carrie Harbath
2. Joanne Bay-Rachel
3. Robin Kozerginski
4. James Catchpole
5. Kyrie Herman
6. Madeline Cheney
7. Cindy Reinhard
8. Ashley Caywood

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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