Raising Rare

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...

“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...

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...

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 con...

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...

“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 t...

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 dis...

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...

“Raghav’s expression for discomfort is laughter, counterintuitively. We call it his cranky laughter.” Sanath Ramesh 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 Brittan...

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...

“I am afraid there is something wrong with her brain” A mother’s intuition is often the first telltale sign of a rare disease. With the deep bonds that are built during pregnancy, there seems to be a connection between mom and kiddo beyond our understanding. But could this be true for an adopted child? Jessica Fein is proof that it can. Her adopted daughter Dalia was born in Guatemala. It was the...

“I am so thankful that we had that one Christmas without knowing…” Jill Wood. When Jill’s son Jonah was born, there was no sign that he was anything but adorable. However, at his 1-year visit, his pediatrician noted Jonah’s larger than normal head and several other symptoms. He connected the dots and ordered further testing. Eventually Jonah was diagnosed with Sanfilippo Syndrome or mucopolysaccha...

Raising a child with a rare and complex disease is a full-time job… or more. Constant advocacy. Almost every interaction regarding the child requires additional effort to bring people or the system up to speed. And this gets piled on top of the normal activity and chaos of life…work, school, the other kid, loss of a family member. There is help available, but that is just one more task to manage....

Flexibility is critical when talking about raising a child with a rare disease. It has been a long time friends. The Raising Rare Team has been dealing with a number of challenges since Season 5 ended. As a result, we have not been able to reconnect and publish an episode until now. We are so glad that you came back! In our Season 6 Opener , we talk about some of those challenges including frequen...

Season 5 has been fantastic. We feel so thankful to our guests for sharing their stories. Which emotion-character from “Inside Out” are you? Sanath and Brittany reveal the characters they relate to the most. Rare parents experience the full range of emotions, sometimes in the period of a single day, and it can get very tiring. In the season finale, we talk about the need to step away from the grin...

As a new parent, you feel like “oh, my gosh, I must be going crazy” or… …maybe the doctors don’t even understand what is going on. New parents do not know what to expect. There is a lot of self-doubt and questioning even in the best of circumstances. Parents of kiddos with rare diseases are faced with an added wave of unexpected symptoms and problems with their children. Naturally, they expect tha...

We often hear the stories of patients and caregivers. Rare Patient Voice is well known for connecting family's stories with the researchers who need to hear them. The founder, Wes Michael, sat down with us to share the results of a caregiver survey they conducted in late 2023. The findings were interesting and affirmed much of what parents raising kiddos with rare diseases already know. So you may...

In Part 1, we heard about the bold and courageous approach that Ryan Benton's family took to treat his Duchenne Muscular Dystrophy. After seeing the success of the stem cell therapy, Blake and Ryan Benton felt very deeply that they needed to inform and educate others about this approach. From the grass roots of a local rock concert grew Coming Together for a Cure (CTFAC). The mission of CTFAC is t...

Blake Benton’s earliest memories were his brother declining due to Duchenne Muscular Dystrophy. About 10 years later, his parents and brother made a bold move. They went to Costa Rica to get an experimental stem cell therapy. And it worked. Ryan was able to live until he was 37 years old with little degeneration caused by his DMD. He died in 2023 of complications from kidney stones. Ryan and Blake...

Type 1 Diabetes (T1D) is not considered a rare disease according to the numbers. The T1D community is quite large and includes people of all ages, races, geography, and conditions. However, many of our guests use the technology developed for T1D patients. In fact, Brittany’s daughter Everleigh relies on the Dexcom G7 to manage her glucose levels. In this episode we speak with Suzanne Hansen, a mot...

Beyond the Diagnosis is more than a traveling art exhibit. It is a movement to humanize the children who happen to have a rare disease. So much of the work around rare diseases is logical, scientific, and medical. It can be a world without feeling. Using art and artists to introduce and celebrate these children is much more personal and evocative. Raghav’s mom Ramya describes it as “creating joy a...

We discuss the joys, challenges, and surprises of raising a child with a rare disease every episode. In this conversation, we reflect on what each of us has learned through these discussions, through life “outside the podcast,” and through other people we have met along the way. Without any set plan we wander through resilience, learning not to react to some changes in our kids, and the need to in...

Losing a child is heartbreaking. Ashley Genelin lost her son Myles when he was just 3 years old. He was diagnosed with cardiofasciocutaneous syndrome or CFC. They did their best to keep him at home as long as possible, even when caring for Myles was like running an ICU. Make-A-Wish allowed them to take this mini-ICU on the road so that Myles could enjoy being with their extended family and the gre...

On this episode we talk to Michelle Fruhschien a mom of two, Noah and Hailey(Jordan Syndrome).  The moment she was born, Michelle says she knew it in her bones that something was different about her daughter even though she didn’t start seeing symptoms for another two months. Over the next few months, Michelle spent a lot of her time googling, asking others for their opinions and was eventual...

“We have a heartbeat, right?”  Josh and Kristin Hoyle knew that life with their new daughter Chloe was going to be different and likely difficult long before she was born. Even in this knowledge, they believed there was a purpose for what they were about to experience. And they leaned into the challenge. Chloe has Bohring-Opitz syndrome and requires 24/7 nursing care to attend to he...