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Natalie Merchant, Wonder, and “The Worst Disease You’ve Never Heard Of”

February 16, 2018 by Janice

This post may contain affiliate links. Read my disclosure policy here.

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I became a Natalie Merchant fan in the 1980’s, the first time I heard a 10,000 Maniacs song, and I have loved her ever since.

I can’t count the memories of mine that include the soundtrack of Natalie Merchant.

Natalie’s voice is hauntingly beautiful and her insightful, powerful lyrics reveal a compassionate soul and determined activist.

Natalie Merchant Wonder and The Worst Disease You Have Never Heard Of


 

Recently I searched up Natalie Merchant on Spotify to make a Natalie Merchant playlist, (since all my 10,000 Maniacs and Natalie Merchant albums are on CDs,) and I noticed she has a collection of tracks. Wonder: Introducing Natalie Merchant, released in correlation with the film Wonder – which was inspired by Natalie’s song, Wonder.

Natalie’s song Wonder was released on her album TigerLily in 1995 and it inspired RJ Palacio’s 2012 best-selling young adult novel, Wonder.

The film Wonder was released in November 2017 and stars Julia Roberts, Owen Wilson, Jacob Tremblay, and Mandy Patinkin.

I saw the film along with my daughter’s class for a school field trip. It was beautiful. I was so grateful my daughter and her classmates had the chance to experience such a touching and inspiring story.

Wonder and the EB Connection

Over the years, Natalie’s song, Wonder, has become a treasured anthem for the special needs community.

In this emotional video, Natalie explains that when she wrote Wonder she didn’t know who it was about until she met this special set of twins with Epidermolysis bullosa (EB). She became close friends with the girls, befriending and mentoring them for years until their death.

If you want a moment of inspiration and to meet some incredible people, watch this video with Natalie.

And if you have never heard the song Wonder before, you really must listen to it. It is indescribable.

Personally, I had only heard of EB a few times on the news and didn’t know much at all about it until I met my dear friend Connie Peters​ who, along with her oldest daughter, lives with this disease. Thankfully, Connie and her daughter have a less severe type of the disease that is not life threatening.

Epidermolysis Bullosa (EB) — “The Worst Disease You’ve Never Heard Of.”

Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30.

Debra.org

For more information on EB in the US visit Debra.org and in Canada visit Debra Canada.

About Debra

Ella, is 10-year-old little girl that inspired the mission of Tag with Ella which supports families with Epidermolysis Bullosa (EB).

Click here to find out how you can help…

Tag with Ella

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Natalie Merchant and Wonder and The Worst Disease You've Never Heard Of

 
Just so you know, this post is not part of any partnership with the movie, book, record company, or Debra.org, but Debra.org did give us permission to use images from their website.
Written by Janice Croze, co-founder of 5 Minutes for Mom
Talk with me: @5minutesformom and Facebook.com/5minutesformom
Pin with me at pinterest.com/5minutesformom

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About Janice

Janice is co-founder of 5 Minutes For Mom. She's been working online since 2003 and is thankful her days are full of social media, writing and photography.

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1 Comment

  1. Jennifer says

    December 11, 2019 at 3:00 pm

    I never knew this about the song “Wonder.” Music has always been very important and therapeutic for me, so when I was pregnant with my daughter in 1997 I chose “Wonder” to be my song for her (“Simple Man” for my son the prior year & “I’ll Stand By You” for the both of them). Oddly in the past 10 years, after a lifetime of unknown pain and surgeries, I received a diagnosis of Ehlers-Danlos Syndrome (ED). This is also a rare connective tissue/auto immune disorder (I have the hyper mobility stage) and have had 25+ surgeries for dislocating joints in my sleep or tearing ligaments/tendons doing everyday movements. Although my stage of ED isn’t as horrible as EB some stages are. ED like EB is also so rare there’s no research for a cure. ED is genetic and I have past this to my children. My children have surpassed my accomplishments and we’ve navigated this disease mainly by them hearing, “don’t move like that or you’ll end up like mommy.” I’ve sent my daughter “her song” numerous times before, during and after her accomplishments or when I feel she needs a pick-me-up. She now plays it for her own motivation. I’d love to hear it sung by her and her college female acapella group. I don’t think Ms. Merchant knew how many lives she’d touch and truly help through her lyrics. It’s such an inspirational song.

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