Raising Rare

“I’m made of nails.”

“No, you’re not.”

When her daughter's doctor said this, Shelley Simon began to recognize that there is no way to avoid the challenging and dark thoughts that invade one’s mind when life feels too much to bear. The terror during her daughter’s seizures. The times she wanted to just drive off and give up. The questions of “what if.” Her book BEAUTIFUL CHAOS captures those thoughts and allows moms and dads who are raising rare kids the grace to feel what they are feeling. To not lose themselves in the fight for their kiddos’ lives.

In our conversation, Shelley connects with Brittany as a ‘big sister’ passing along wisdom she has gained from parents who have gone before her. She feels a need to continue passing these honest words is return for having her beautiful daughter.

This is one of the deepest conversations we have had on Raising Rare.

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.

Almost 7 years ago, Sanath Kumar Ramesh found out his son had an ultra-rare mutation.

This began a journey that would force him to grow into a man he never imagined. Part of his journey was this podcast, Raising Rare. Now, after completing our sixth season, Sanath is going to step back from this microphone.

In this episode, we reflect on our beginnings, our favorite conversations, and the deep connections that we have developed with each other and our co-host Brittany Ratke.

And with that... we close Season 6.

How do you tell whether a zebra is male or female?

The male doesn’t’ talk about their #raredisease.

This can be hard on them. There have been very few places for them to gather to take care of their #mentalhealth. David Hogan set out to change this when the COVID pandemic threatened to isolate us all even more. David is affected by Cowden’s syndrome, and his mother had the condition as well. When she died, he felt the full weight of rare disease on his own mental wellbeing.

He noticed that there were many places for women to gather, but it was not a great place for men to show their vulnerabilities. We needed something different.

David took action and started inviting men in the rare disease community into conversation. Those conversations have now become the Men’s Rare Wellness Forum, a monthly opportunity for the male zebras to take care of themselves and each other. All men in the rare community – patients, Dads, brothers, caregivers, and providers – are invited.

You can learn more about the Men’s Rare Wellness Forum by reaching out to David at [email protected] or searching “@mensrarediseasemh” on Instagram or David Hogan on LinkedIn

“This journey has changed our lives, has reshaped my identity. Plans change, dreams shift. I've had to learn to become more than just a mom.”

Mariah only started this journey earlier this year. She has climbed the initial learning curve very quickly and has used her professional skills to navigate the logistical, interpersonal, and emotional twists that rare diagnosis brings. She even found time to talk to us on Raising Rare.

Her younger son has GRIN2A. Like many kiddos with rare diagnoses, Marcus shines a light that helps him connect with people. While he doesn’t use words, his smile and deep dimples are his secret weapons.

Mariah has a very simple outlook. “Marcus has a rare diagnosis, but he also deserves the same shot at a full thriving life.” She and her husband have embraced the uninvited challenge of helping him find that.

We are sure you will be inspired by their spirit.

Five years ago, we first spoke with Nikki McIntosh. In this episode, Nikki returns to share her journey as a mother of a child with spinal muscular atrophy (SMA) and the profound impact of clinical trials on her son’s life. Miles is growing up and has started playing wheelchair tennis. Nikki shares the joy this brings to her.

Nikki also discusses the emotional roller coaster of navigating rare diseases, the importance of community support, and her new book, 'Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease.' The conversation and the book highlight resilience, advocacy, and the need for actionable strategies for parents facing similar challenges.

https://raremamas.com