The Rare Life

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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 with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.

Recent Episodes
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Recent Reviews
  • DuckFaninOregon
    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.
  • Jerichokauai
    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.
  • littlebit322
    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 enough, it immediately made me think of The Rare Life and I scanned for an episode I could relate to and began to listen [once again]. Being the mother of a micro-Preemie has plenty of challenges, and while I know we’re extremely lucky that our son will grow out of most of those challenges; for the time being listening to other Momma’s of medically complex kiddos on your show has made me feel seen and heard in a way that I just haven’t found in my own community. Thank you for your thoughtful content and the time you take to find experts/personal stories that resonate so much for us Mommas of medically complex kiddos.
  • doctorTND
    5-Star Review - Dr. Tay
    I love this podcast because of the honest and authentic conversations Madeleine brings to the table. As a licensed psychologist that works with neurodivergent children, it makes my heart so full that there are resources like this podcast for all families to listen to!
  • 555387654
    Nicu nurses
    I am a nicu nurse. It was so nice to hear how so many of us feel. And what parents can expect. I am retired now but I still miss the babies and the families I got close too. It is a privilege to take care of these little babies who fight to live. And make no mistake we do love the babies I mean real love.
  • melcombs
    Alexis’ Story
    Thank you for sharing this episode and Alexis, for sharing your story. I needed to hear this. Thank you.
  • Sleepyteacher
    Great Viewpoints
    I have enjoyed listening to my first few episodes. As a mom of a daughter with multiple diagnoses I have found much to connect with. Thanks for sharing your heart.
  • ptmjecz
    Relatable
    So many good subjects and so good to know we are not alone. Thank you for your hard work to bring these podcasts to us and help us feel less alone!
  • jeggggg1111
    The Best!!
    If you’re in anyway involved in the life of a child with disabilities or medical complexities this is a great listen. And a great way to find community!
  • zaira tinoco
    Most relatable podcast ever
    Life as a parent of a child w disabilities is one of the most unique experiences that literally only other disability parents can relate to. I love how each podcast is relatable but also how it can help others who don’t know the struggle.
  • melissaceke
    Find the Community You Need
    Finding a community is essential for parents of kids with rare diseases! This podcast has been a great complement to the other wonderful people I’ve connected with on social media who are navigating a similar life. Empowers me on my good days and helps lift me on up my difficult days!
  • Em_ro
    Emily campbell
    It’s so nice being able to relate to another family with everything medical moms go through! Highly recommend!
  • LydiaNQ
    Feeling Heard/Seen
    Finally a place I can go to just be heard and seen, I appreciate this podcast in so many ways. I don’t feel so alone. 💜
  • Laur238
    Relatable
    This podcast gives a voice to my feelings! It’s so relatable and refreshing to hear other stories like mine.
  • KrisSevel
    Love!
    Love! Rare parents need someone in their corner who “just gets it”
  • Rsexton2
    Real
    This podcast is such a game changer for me. Parenting a medically complex kid is hard and isolating, but these episodes help me to remember that I’m not alone. I loved finding a sense of community in this series!
  • LaurenF25
    Thank you!
    Thank you for creating this podcast. It feels less isolating to hear other stories of parenting a disabled child. I find something to relate to on every episode.
  • alli_7_93
    5 star!
    The best thing to happen for my mental health since receiving my sons diagnosis… finding this podcast!
  • epwalker
    Much needed
    This podcast is a breath of fresh air. When having a child with medical complexities the easiest everyday tasks can be overwhelming. Madison does a great job with providing knowledge and creating a virtual table for all of us special needs parents to sit around and be apart of.
  • fcyyu
    My Daily Dose of Therapy!
    This is the best podcast for education on children with rare conditions and what their life might look like. I feel like I have a group of friends that I am surrounded by because the topics are things I am dealing with and going through. When I am having a hard day this podcast helps lift my spirits. I even told my parents and in laws to listen to better under and what our family is going through.
  • oconnor_strong
    We are seen
    This show really sees every person in their journey in these difficult lives. It helps us to feel more seen and also know we aren’t alone.
  • 23456ab
    Amazing
    I have loved listening to this. The episodes are so thought out and cover so many subjects. I recommended this any parents going through this crazy world with medically complicated kiddos or any friends/ family that can relate and love to learn.
  • A.L.W.47
    The support I needed in my toughest days
    The Rare Life has been the support and has given me strength and knowledge that I needed on all the tough days of parenting a child with a disability. The episodes are so well done, I look forward to listening every week!
  • Momma Fanny
    Community
    This is what I’ve been missing in my life since we found out our daughter has a rare disease. When I feel like the closest people to me still don’t understand this life, I know I can feel seen here. Thanks for keeping it real!
  • MamaCoolper
    Just what I didn’t know I needed
    I was hesitant to listen for months because I felt like my whole life was already consumed by this life, but it was such a refreshing outlet because I finally didn’t feel alone.
  • bmalcox
    Life changing
    This podcast is everything I needed to hear this year after my son was diagnosed with a rare genetic condition during a global pandemic. When I was feeling lost, alone and confused, this podcast featured moms, therapists and people who just understood all of the feelings I had. This podcast will make you laugh, cry, embrace your inner warrior self and learn how to enjoy the journey of life with your child even more. Even if you don’t have a child with needs or a rare diagnosis, this podcast teaches you how to be a better friend, better parent and better advocate for those around you. Thank you so much for all you do Madeline!!
  • momomarpy
    Makes us all feel a little less alone
    Thank you for your work
  • mightymouse416
    5 stars!
    So encouraging! Thank you for making us feel lie we are not alone
  • KarlHendo
    Best podcast!
    This podcast has literally saved me. It’s one of the only I listen to. It helps me remember that I’m not alone and people DO understand. It is a must listen for all.
  • jdawgers
    A reason to smile
    Madeline not only covers the good, but she also covers the hard things of being a mother of a child who has a disability or disabilities. Her podcasts are friendly reminders that there are others in the thick of it. We may not be going through the same things, and we all handle our things differently, but we are in it together. Appreciate her and her advocacy.
  • !!Doesn't work!!
    Grateful
    So grateful I found this podcast. It’s been a huge blessing to me as we just found out my son’s rare genetic condition. Thank you!
  • Lotsofbotts
    Thankful
    So thankful to have found this podcast. As a mom to kids with disabilities it’s easy to feel isolated and alone. Nice to have other mamas who get it!
  • SeedyC
    Makes me feel less alone
    This podcast is like having a friend to talk to talk to about all the complicated emotions and logistics of navigating life as the parent of a medically complex child. I find myself nodding along (and then re-listening) to basically every episode.
  • ilovekoreatotesalot
    Helps me feel like I’m not alone.
    Love this podcast. Madeline and her guests are so relatable to medical moms and moms with disabled children. Helps me feel supported through this motherhood journey.
  • Emac0511
    Love this podcast!
    This podcast helps me feel less alone in my journey with two medically complex girls. Thank you for what you do!
  • colleenrie
    A podcast to turn to
    Having a child with a rare syndrome can feel so isolating. I find myself listening when I need an outlet to feel like I am not alone and that there are other parents and families out there experiencing the same things that mine is! I would also recommend family and friends listen to get some insight on things our family goes through.
  • Aldana0807
    This pod cast has a special place
    I felt a huge relief after I found Madeline, and her podcast. I feel seen and validated. Love it
  • Devina_CFmama
    So Relatable
    I love the Rare Life Podcast. Their content is so relatable and they aren’t afraid to talk on tough conversations. I think this is a great podcast for newly diagnosed parents of a medically complex child or one’s who have been in the medical world for a long time! Highly recommend!
  • Hzstjgjc
    Thank You
    this is THE BEST podcast for medical parents, not only does it make you feel less lonely in this life, it gives you different perspective and outlooks on different situations! i love it so much!
  • KTB95
    I feel seen!
    So wonderful to listen to someone who fully understands and lives this life along side you. I feel seen and validated! Thank you!
  • Alexandra Emory
    Lifesavers
    This podcast has been a lifeline during challenging seasons of our daughter’s life. I always feel seen, validated and loved when listening to these episodes. Madeline does a great job of sharing different views and it’s great to hear the different perspectives. Huge supporter!
  • Lar lar0101
    Grateful
    So happy I was told about this podcast, thank you for all that you do!!!
  • JayJay in LA
    Like talking to a friend
    Super relatable and helpful podcast for parents of kids with special needs. Thanks for all your hard work, it is making a difference. :)
  • Ole67823561
    A must for medical mamas!
    Wow. In a world that feels so isolating, this podcast has brought me life, a community, and support. The way that Madeline relates to her listeners is so valuable and the topics are so unique and relevant! I can not say enough good things!
  • Freyas lucky arm
    Helps me feel not alone
    I am a mother of a child with a rare syndrome. I live in a small town and don’t know anyone in my town with a rare diagnosis. Listening to Madeline and her guests every week help me feel not alone. Their stories help me feel seen. I find myself nodding in agreement every week. If you have a rare diagnosis or love someone who does this podcast is a must listen to.
  • amberpdidit
    I learn and grow every episode
    I work as a CNA on a medical floor and I am in nursing school. I LOVE this podcast as a way to connect with how some of the families and caregivers are feeling. I’m a parent too and always love hearing the love that shines when parents talk about their kids.
  • EricaJolene
    REAL, in all the right ways…
    When listening to the The Rare Life, I constantly find my self nodding my head in camaraderie with Madeline and the guests. It is so very comforting to hear many different people sharing about the realities of their lives as they navigate all aspects of caregiving for children with a rare disease. I appreciate the honesty, the authenticity, the willingness to be brave and vulnerable. Hearing the similarities of my life in the stories of others has been both encouraging and empowering. I deeply appreciate this podcast and the compassionate perspective that Madeline brings to each episode.
  • Brittany Mils
    Love love love this podcast!
    I stumbled upon The Rare Life podcast shortly after my son received his CTNNB1-syndrome diagnosis and wow did I find it at just the right time. This podcast has helped fill my empty cup in a way that only a special needs mama would understand. I was feeling very isolated and like nobody understood what I’m going through, but as soon as I listened to a few episodes, I felt SO seen. Listening to Madeline is like chatting with an old friend over coffee. She’s so conversational, honest and covers an array of topics that are so helpful for parents of children with disabilities. I always appreciate her perspective and the perspectives of the guests she brings on the podcast. I feel encouraged and more informed after every episode. I look forward to listening every week!
  • EpilepsyWarriorMama
    The Rare Life is exactly what we need!
    I am a mother of two, and my younger son has a myriad of medical challenges associated with a very rare genetic variation. I had been unable to find a community of people to connect with - really connect with. After hitting the breaking point emotionally, I thought - try social media! I got on Instagram and began a seeking connection with other parents. Enter Madeline’s podcast! When I found the podcast, I was shocked in the best of ways. This! This is exactly what I was looking for. I’m so amazed, grateful and inspired by Madeline and will forever be thankful that she chose to produce The Rare Life. 💜
  • moreard
    Raw and transparent! Found my community!
    Mother of 2 beautiful littles, second (2.5) having a rare superpower genetic disorder and it’s been....well....tough. Listening to your podcast feels like you’re reaching into my soul and I finally feel less alone. I think therapy is so SO important but what if you’re in the stage when you can’t afford therapy, both financially and time wise? (Bc this community knows not just anyone care for our rare super humans!) And this is where your podcast has truly helped so much, the content, so on point of course, but even just the freedom and flexibility (which is one thing I sometimes feel robbed of) to listen WHEN I can. So just, THANK YOU!
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