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. Applying, interviewing visiting nurses or personal care aids, scheduling, handling unexpected absences, and managing performance. While the extra help is welcomed, it comes at a cost. On top of this, add frequent admissions to the hospital. Each hospitalization completely disrupts the family, interferes with work, and creates new challenges. Time management. Fatigue. Relationship tensions. This burden gets multiplied when dealing with multiple medical systems. These systems do not communicate well with each other. Big Academic Medical Centers may have more capabilities, but often they are too far away to be feasible for emergency care.Brittany opens up and talks about these challenges and how she and her family manage them. More importantly, she talks about the personal toll this all takes.
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36:01
It Has Been a Minute... Or Two
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 frequent hospital visits, mental health, job changes, and other family members. But we also talk about some of the kiddos’ favorite books and the reasons that we love to share our discussions.And there is a surprise…Listen all the way to the end and then post a review that includes a comment about how our surprise makes you feel!
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27:59
The Importance and Power of Taking A Break (Season Finale)
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 grind of advocacy, social media, and all the other commitments we choose to make. We talk about retreating into our cave to discover the next leg of the journey. We are taking a bit of break too. We plan to be back in early 2025. Until then, please go back and listen to our other seasons. You will be surprised by how many of our previous guests have become well-known names in the rare community. Mentioned in this episode:Invitation to Check Out The AtlasThe Atlas
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24:09
Complicated
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 that the healthcare system will help them. But when a young patient keeps showing up with a variety of unexplained symptoms, that very healthcare system starts to struggle. Physicians and other providers are trained to recognize and diagnosis diseases. They are taught that they are experts upon whom patients and families rely. When they don’t have answers, they too can feel vulnerable.In some instances, those doctors begin to question the parents and their motives. There is even a diagnosis for this, Munchausen By Proxy (MBP). The problem is that the signs of MBP and just being a good parent of a rare child look very much the same.Donna Sullivan shares about traumatic experiences of those suspected of imagining their kids’ illnesses. Their relentless advocacy was costing them their credibility.Sadly, this situation is more common than it should be. Donna is now working on a film called, “Complicated” that raises awareness and addresses this issue. Mentioned in this episode:Invitation to Check Out The AtlasThe Atlas
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49:51
Wes Michael: Dedicated to Amplifying the Rare Patient Voice
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 ask, "So what?" The importance of this first such survey is that it begins to quantify the range and depth of the impact of rare diseases on families. These data can now be used to make the case for new policy, for the need to provide for these families, and even to explain to outsiders what they are going through. Mentioned in this episode:Invitation to Check Out The AtlasThe Atlas
Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder.
That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown.
They were alone.
They were scared.
And then they went into action.
And now they want to share their story.
Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps.
We don’t know where this story will go. We do know we want you to join us for the journey.
New Zealand