Raising Rare

“I was 24 years old and I was given a baby on life support machines and told to keep it alive.”This is how Shelley Simon’s lifelong performance began. A relentless, unending, and critical performance. A weight of responsibility that nobody expects.
Her daughter Zoe was born with Congenital Central Hypoventilation Syndrome – CCHS. This is a condition of the autonomic nervous system that means Zoe needs to be on a ventilator. Currently, she only needs the ventilator while sleeping or when something goes awry.
It’s that last part that keeps Shelley on her toes. There is no time to drop the vigilance or step away from the performance.
But Shelley has learned to allow Zoe to do all the things kids like to do including skiing and snorkeling. As she has been shaped by Zoe, she has committed to helping others navigate this path, this performance, with courage.
We will talk more about this and her book “Beautiful Chaos” in the next episode.

“I have no idea what I'm doing. I've never done this before. I am a pediatrician, but I have not been trained on this. I couldn't be more qualified to be Soraya's mother, and yet I am clueless.” Tasha Faruqui
In this conversation, Dr. Tasha Faruqui shares her lived experience raising her daughter who has been diagnosed with TAOK-1. It is a story of simultaneously seeing two sides of the rare disease experience. And that surfaces a ton of insights that parents raising kiddos with rare disease can learn from.
As a pediatrician, she understands medical terminology, lab results, and other measure. As a mom, she now knows what it feels like to be gaslighted. This experience has shown her the value of honesty, in both directions and with her children.
Her family has coined the term “sucking the joy out of life” which perfectly captures the duality of the situation. Undoubtedly, a rare disease can take a huge emotional toll and, at the same time, bring the moments of joy into stark focus. It all depends on how you look at it.
Tasha wants our listeners to understand that the story is not finished. Not hers. Not theirs. You can learn more about her ongoing story in her book KEEP YOUR HEAP UP: A MOTHER’S STORY OF CHASING JOY IN THE FACE OF GRIEF.

Our conversation explores the end of the school year, summer planning, managing health challenges, and finding peace amidst life's unpredictability. Brittany and Kevin share insights on delegation, self-care, and maintaining perspective during busy seasons.
A note from Kevin: As we were preparing to publish this episode, Brittany and her family faced another unexpected challenge. Everleigh had a severe seizure episode on Father’s Day. As of today, she has been hospitalized for nearly a week and is undergoing several tests. We ask our listeners to keep their whole family in your thoughts and prayers.
This situation serves to remind us just how challenging raising kiddos with rare diseases can be. It is ironic that our discussion, recorded nearly a month ago, covered the challenges of being prepared for unpredictability.

“I didn’t realize how alone I was.”
For Prader-Willi Syndrome (PWS) awareness month, we are sharing a discussion with Jessica Patay, founder of We Are Braver Together. PWS requires 24/7 vigilance over a child whose appetite is unsatiable. This can become isolating, exhausting, and overwhelming to even the strongest moms. Jessica has turned her experience into a lifeline for other rare moms.
We Are Brave Together emerged from the recognition that the girlfriend retreats she was hosting would be very helpful to moms who are caregivers. As these retreats have grown, she has helped many women feel like they belong. We Are Brave Together is built on the idea that human beings deserve to be seen, heard, understood, and validated. The retreats, the podcasts, the books all work to bring these moms together to share their stories.
Her first book, Becoming Brave Together, was to share stories. The new book Suddenly Brave Together is a collection of letters from moms who have adult rare children to the new moms who have just gotten a diagnosis. Many hands and hearts reaching out across the universe saying, “You are not alone.”

100 EPISODES!!!
It is hard to believe that over 6 years ago, we started Raising Rare as an experiment. How would people react to following the life of a young family affected by an ultra-rare disease? The response has been wonderful. The experience has been transforming. We thank Sanath Kumar Ramesh for sharing his stories all these years.
And with our 100th Episode, we start a new era for Raising Rare. Brittany Ratke will be my partner, riding solo in the co-host seat. Brittany and Sanath have shared the co-host role since 2022. With this change, we are going to focus more on Brittany’s family and slowly shape the show to her story and her style. Laughter, tears, and heartfelt questions.
Our hope is that our conversation will bring more people from the rare disease community together. As we reflect, we realize how many amazing people we have met along the way.
Brittany shares some positive developments in their care team, Everleigh’s school, and family life. They even celebrated Rare Disease Day at school.
We also touched on the impact on and of siblings of kiddos with a rare disease. They grow up faster than a lot of kids. They share in ways most people would not realize.
We are looking forward to a great season.