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Epidermolysis Bullosa

Finding a Cure For a Life of Constant Pain

Elli Thompson Purtell | Posted 02.10.2016 | Impact
Elli Thompson Purtell

Rafi was born with Epidermolysis Bullosa, a rare genetic connective tissue disorder that results in extremely fragile skin and blistering. Even the slightest contact can tear the skin or cause blistering.

A Struggle, A Battle, A Nightmare That Parents Never Want to Face

Regan Long | Posted 10.28.2015 | Impact
Regan Long

Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects about 200 children born every single year. Although this seems like a relatively small number, the horror that these babies face is well... unthinkable.

The Best Friend Ever? Meet A 9-Year-Old Bracelet Philanthropist

The Huffington Post | Katie Sola | Posted 07.27.2015 | Good News

A 9-year-old girl with a big heart and nimble fingers raised $47,000 for a sick friend by selling rubber band bracelets on Facebook. Bethany Walker wa...

'Butterfly Child' With Rare, Painful Condition Displays Strength That Will Blow You Away

The Huffington Post | Taylor Pittman | Posted 04.21.2015 | Teen

For 14-year-old Jonathan Pitre, a day free of pain only exists in his dreams. A video from Canada's The Sports Network focuses on Jonathan and his...

A Special Holiday Wish From Two Butterfly Moms

Jamie Silver | Posted 02.10.2015 | Parents
Jamie Silver

For most parents, the holidays are a time filled with family, friends and happiness. While this is also true for mothers like us who have children with extreme medical needs, we have a special holiday wish -- that our children could experience and celebrate the season without debilitating pain for just one day.

How The Butterfly Moms Spend Their Summer Vacation

Jamie Silver | Posted 08.14.2014 | Impact
Jamie Silver

Butterflies are everywhere. Some of us wear them subtly on charms around our necks or dangling from our ears. Others wear t-shirts or sunglasses emblazoned with them. And then there are those who wear their butterflies more permanently, tattooing their skin with these winged creatures. No, we are not lepidopterists (scientists who study butterflies) or even butterfly enthusiasts. We are mothers -- mothers who have come together from around the country with a shared experience -- we have children whose skin is as fragile as a butterfly's wings.

Justin Timberlake Gives Boy With Rare Skin Condition VIP Treatment At NYC Concert

The Huffington Post | Robbie Couch | Posted 07.11.2014 | Impact

It's safe to say Thursday was a good day for Robbie Twible. The 12-year-old from Long Island, New York, had quite the A-list experience before, dur...

The Gift of a 'Rare' Child

Alexander Silver | Posted 08.13.2014 | Impact
Alexander Silver

Over my dead body was my son going to suffer like this without my putting up a fight that I didn't know that I was capable of waging.

Father's Day Heroes

Andrea Pett Joseph | Posted 07.29.2014 | Impact
Andrea Pett Joseph

Imagine watching your child face each day with pain and suffering, when even gentle hugs can bring about tears and every day is a challenge just to take a bath or walk up stairs.

Baby With Rare, Painful Skin Disorder Gets Help From Family And Friends

The Huffington Post | Mandy Velez | Posted 05.15.2014 | Parents

A week after Brittany Weingart gave birth to her son, Lane, sores and blisters started popping up all over his body. The Edinburgh, Indiana, mothe...

Texas Spitfire Abbie Evans Fights Epidermolysis Bullosa In Cary Bell's Butterfly Girl

Kristin McCracken | Posted 06.16.2014 | Entertainment
Kristin McCracken

We caught up with Bell to discuss her advice to aspiring filmmakers, her philosophies on narrative non-fiction filmmaking, and what makes Abbie so special.

Family Kicked Out Of Restaurant Over Medical Issue: Lawsuit

Posted 02.21.2013 | Detroit

Golden Corral restaurants may offer all-you-can eat buffets, but are they open to all? The federal government sued a Westland, Mich. Golden Corral ...

PHOTOS: Family Raises Awareness Of Baby's Incurable 'Worst Disease You've Never Heard Of'

Posted 08.27.2012 | Impact

Imagine, as a parent, not being able to touch and hold your baby. Two parents are on a mission to raise awareness for their little girl's little-known...