The PMD Story: It's Rare but Everywhere
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Health and Wellness

The PMD Story: It's Rare but Everywhere

They were and are simply just like the rest of us.

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The PMD Story: It's Rare but Everywhere
Julie Hoffman

Pelizaeus Merzbacher Disease (Please-Z-us Merz-bocker), otherwise known as PMD, is rare but it's everywhere. My high school classmates and I were blessed to be friends with two individuals who was diagnosed with PMD. For those of you who don’t know what PMD is, I’ll explain to the best of my ability.

Being named after two German physicians, PMD a rare genetic disease that affects the myelin sheath that covers the nerves of the central nervous system. Belonging in the Leukodystrophies family, PMD is one of the disorders that affects the body’s ability to produce and/or maintain the myelin sheath that insulates the central nervous system. Similar to an electrical or cable wire, if the insulation of the wire is worn down or is even missing the electrical current isn’t capable of reaching the needed destination. This can prevent individuals with PMD from speaking and/or being able to move certain body parts. Additionally, PMD is such a rare disease that most doctors won’t ever see a patient diagnosed with this. There are less than 1,500 patients diagnosed worldwide. Most of the patients diagnosed are males, there are rarely any females diagnosed.

My high school graduating class was fortunate enough to have personally known two bright, young individuals with PMD, Peyton, and Parker. They are some the most caring and compassionate individuals I have known. In 2010 after a long battle with pneumonia, Peyton passed away two months shy of his twelfth birthday. Their family has and always will hold a special place in our hearts.

Peyton and Parker went to school almost every day, loved action, being involved, and weren’t afraid to let you know what they loved to do. They both were also BIG Chicago Cubs fans. Peyton had the greatest smile and showed everyone he met how to live life with pure joy. Parker also has an amazing smile and especially loves it when you accidentally hurt yourself or anything that makes you look silly. He also loves to go fishing and hanging out with his friends and family. We all will look back on the memories made with Peyton and think of how much of an impact he left on us. We will also continue to make amazing memories with Parker and be involved within his life.

To us, our friends didn’t have a disorder they were/are simply like the rest of us. Participating in school and community activities made our friendships worth every minute. PMD may have prevented them from physically participating in some activities, but with the right people Peyton and Parker could be fully involved and were capable of having as much fun as everyone else.

**Information about PMD found on pmdfamilysupport.com

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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