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 mensrarediseasemh@gmail.com 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

The stories of rare kids powerfully shape the stories of the parents who are raising them.

In this episode, Claudia Parker discusses how her daughter, who has FOXP1 syndrome, has brought so many benefits into her family’s lives.

But this was not easy. Claudia had to deal with the fact that her dreams and plans for her daughter were not their reality. As she prayed for the situation to change, she was comforted that her daughter was not broken; and this was humbling. She was healthy. But she had different abilities.

Once they embraced her daughter for who she was, their lives began to be shaped in wonderful ways. Claudia’s husband uses their daughter’s story to help educators understand how to connect with, understand, and love students who may not fit the mold. Their lived experience has ignited a storytelling passion in Claudia that has resulted in pursuit of a career in filmmaking.

You can see more of their story at http://www.youtube.com/user/Timesofmylife

We hope you enjoy the conversation.

Imagine not being able to tell the people around that you are in pain. Or more accurately, imagine that you have no way of telling whether your child is in pain. If that child is usually happy and laughing, imagine your horror when you figure out that laughter means “ow.”

For Brittany, while Evie can tell her when she is in pain, Evie is so used to the pain that she may not even mention it until it is extreme. And sometimes that is too late to avert a crisis.

Pain management is a very difficult problem in the best of circumstances. For Sanath and Ramya, it gets even more complicated. The treatments they have found that work tend to lose effectiveness after a while. And sometimes, the rebound pain seems worse.

In this episode, Sanath opens up about their relentless struggle to keep Raghav comfortable and the extreme toll it takes on everyone in the family.

This season, you probably have heard Everleigh’s voice a little more often. It was this story that gave us the idea.

In this short episode, we hear about one of the unexpected struggles that Brittany had to deal with earlier this year. Usually, Evie is the one in the hospital but this time, Brittany’s son Maverick was the patient. The remarkable thing is that this challenge turned into a wonderful opportunity for Evie to play the role of big sister at one of her favorite places – Ronald McDonald House.

It really provides a glimpse into the joy of a child, no matter what the circumstances.

We hope you enjoy it.