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Meet Angie and Harper – Washington State


Harper Helped Me Find My Voice:

How one mother’s love became a mission to help children and families feel seen, confident, and hopeful

I’ve shared so much of Harper’s story, but I don’t think I’ve ever really shared what sharing her story has done to me.

From the beginning, I’ve wanted Harper to grow up knowing she belongs everywhere she wants to be; that she can take up space, dream big, try everything and never believe that looking different makes her less than anyone else.

A lot of that passion comes from my own life. I was an incredibly shy little girl and grew up with very little confidence. There are parts of that story I’ll always keep private, but it absolutely shaped the kind of mom i wanted to be.
And then Harper changed me too.

While I was trying so hard to build her confidence, she somehow helped me find mine. Because of her, I learned to speak up, advocate, do interviews, television, documentaries and public speaking — things i truly never imagined myself doing.

I found my voice, because I needed to use it for her. And now this feels so much bigger than the two of us.

We hear constantly from people who tell us Harper gave them hope, helped their child feel less alone or gave them confidence to embrace what makes them different.

That’s why I want to do more!

I’m working hard behind the scenes right now on what comes next. I’m not ready to share the details yet, but my intention is much bigger than social media. I want to take everything Harper’s story has become and turn it into something meaningful and lasting that can help even more children and families; for Harper, for the children who need to see someone like themselves, for the parents who need hope and maybe a little bit for the younger version of me who never imagined she’d someday find her voice.

#mymission #findingmyvoice #harlequinichthyosis #myw

What’s Your Story, We’d Love to Hear It.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.