“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 mucopolysaccharidosis type III (MPS III).

Jill began connecting with other Sanfilippo families and eventually started a company to search for treatments. She found along the way that she could find support from willing researchers, win grants from the National Science Foundation, and even overcome language barriers to reach families around the world. She has made great progress and is very grateful for all the help she has received.

As you can imagine, 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. 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.

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!