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Mick Unplugged

Chad and Alicia Bohley | Beyond the Diagnosis: A Family's Fight Against MPS 1

Mick Unplugged

Mick Hunt

Business, Entrepreneurship, Education, Self-improvement

51.6K Ratings

🗓️ 10 July 2024

⏱️ 33 minutes

🧾️ Download transcript

Summary

In this heartfelt episode, Mick Hunt talks with Chad and Alicia about their family's battle with MPS 1 following their son's late diagnosis. They discuss the complexities of the disease, the critical role of early detection, and their dedicated efforts to raise awareness and support other affected families. Their story is not just one of challenges but also immense love, resilience, and hope.

Background: Chad and Alicia share their journey dealing with their son’s diagnosis of MPS 1, a rare genetic condition.

Discussion Topics:

  • The challenges of recognizing and diagnosing MPS 1 include initial symptoms and the genetic aspects of the disease.
  • The emotional and practical impacts of MPS 1 on their family life, detailing their son's various treatments and their advocacy efforts.
  • The importance of genetic testing and early diagnosis, and the couple's involvement in legislative changes to support this cause.

Key Quotes:

  • "No parents should have to wait three years to get this diagnosis."
  • "Every single symptom he has was like checking off a box."

Next Steps:

  • Learn More: Dive deeper into MPS 1 and how you can support families and research.
  • Reflect: Consider how you can contribute to advocacy in your community for rare diseases.
  • Engage: Share your thoughts or stories about overcoming health challenges using #MickUnplugged.

Connect & Discover:
National MPS Society: mpssociety.org>courage>jacob-bohley

★ Support this podcast on Patreon ★

See omnystudio.com/listener for privacy information.

Transcript

Click on a timestamp to play from that location

0:00.0

Are you ready to change your habits, sculpt your destiny, and light up your path to greatness?

0:07.0

Welcome to the epicenter of transformation. This is Mick Unplugged.

0:13.0

We'll help you identify your because, so you can create a routine that's not just productive, but powerful.

0:25.7

You'll embrace the art of evolution, adapt strategies to stay ahead of the game,

0:28.0

and take a step toward the extraordinary.

0:30.4

So let's unleash your potential.

0:32.2

Now, here's Mick.

0:39.3

Ladies and gentlemen, welcome to a very special episode of Mick Unplug. For the first time, we're live on location with two friends of mine that are dear to my heart.

0:44.3

Chad and Alicia.

0:45.3

Thank you, thank you.

0:46.3

You know, on Mick Unplug, we talk about doing deeper than your why and being fueled by your because.

0:52.3

And today we're going to talk about a very important cause,

0:55.0

fighting a very dynamic and important disease.

0:58.0

MPS1, Chad and Alicia.

1:00.0

Talk to me about this disease,

1:02.0

and then let's talk about how you became a fighter

1:05.0

for the awareness of this disease.

1:07.0

So MPS1 is a genetic disease.

1:10.0

It's classified as a lysosomal storage disorder. So in easy to

1:14.2

understand terms, our son was born with this. He was born missing an enzyme that breaks down

1:19.6

cellular waste. So it affects his entire body. The way that we explained it to our seven-year-old

1:24.5

daughter at the time was that think of your whole body as a house.

...

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