“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.  Eventually Jonah was diagnosed with Sanfilippo Syndrome or mucopolysaccharidosis type III (MPS III).

 Jill began connecting with other Sanfilippo families and eventually started a company to search for treatments.  She has made great progress and is very grateful for all the help she has received.

Jill is very energetic.  Her story is inspiring and educational.  Her main piece of advice to newly diagnosed parents, “Take a deep breath and calm down. Appreciate your child.”

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.

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.

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.

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!

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 and retreat into the 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. 

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.

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 discusses her traumatic experience of being suspected of imagining her two kids’ illnesses.  Her relentless advocacy was costing her credibility.

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.

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.

It was a chance of a lifetime, but it was scary for 10-year-old. Billy tells us about his memories and perspective being in a clinical trial for Duchenne Muscular Dystrophy. 

They were on the front lines of research that has now brought hope to some boys with Duchenne Muscular Dystrophy. Exon skipping clinical trial.

Parents cannot focus 100% on the child as well as make progress toward a treatment. It’s just not humanly possible.