October 5, 2018 epidermolysis bullosa, September 2018 Feature - Skin Conditions, Skin Conditions, Whitney 1 Comments

Epidermolysis bullosa. It’s a bit of a mouthful, and that’s just the start. Beyond the general diagnosis lie various types and subtypes that add multi-syllabic words to an already difficult to pronounce condition. Epidermolysis bullosa is the condition our daughter was born with. It causes her skin to be extremely fragile – shearing off and …Read More

September 27, 2018 adopting as first time parents, adoption community, epidermolysis bullosa, Family Stories, September 2018 Feature - Skin Conditions, Skin Conditions 0 Comments

According to the Dystrophic Epidermolysis Bullosa Research Association (DEBRA), a U.S. based nonprofit organization that supports the Epidermolysis Bullosa (EB) community, Epidermolysis Bullosa (or EB) is a rare, genetic connective skin condition in which not enough protein is produced to allow skin to adhere to itself. In the U.S., one of every 20,000 births are …Read More

January 5, 2018 epidermolysis bullosa, Skin Conditions, Whitney 2 Comments

Epidermolysis Bullosa (EB) is a group of inherited genetic skin disorders. There are five major types of EB and within each type there are subtypes. People affected by EB are often called Butterfly Children when they are younger as their skin is as fragile as a butterfly’s wings. Though it is a debilitating, painful, and …Read More

September 1, 2017 albinism, birthmark, burns, Congenital nevus, epidermolysis bullosa, Favorite Family Stories, ichthyiosis, September 2017 Feature - Skin Conditions, Skin Conditions 0 Comments

The term special needs can sound scary. But it doesn’t have to stay that way. Our goal at NHBO is to equip and inform parents – replacing fear with knowledge – as they navigate the beginning stages of special needs adoption. And then encourage and support those home with their special needs kiddos. We do …Read More

December 5, 2016 epidermolysis bullosa, Skin Conditions, undiagnosed SN, Whitney 0 Comments

Medical needs adoption is one you have to walk into with your eyes wide open. Though prospective parents may have a medical history presented to them before saying the biggest “yes” of their lives, you have to know this: there are unknowns. There will always be unknowns. We knew about the unknowns before saying our …Read More

November 5, 2016 adoption realities, Attachment, epidermolysis bullosa, Whitney 4 Comments

Raise your hand if you tend to overthink things. Now, raise both hands, jump up and down, throw your head back and yell, “Yes, this is me!”, if you’re an adoptive mama and you tend to overthink things. Overthinking is a habit that can be dangerous in the best of situations. Overthinking when you’re processing …Read More

October 3, 2016 Education, epidermolysis bullosa, private school, September 2016 Feature - Back to School, Skin Conditions, Whitney 0 Comments

“Shoot for the moon. Even if you miss, you’ll land among the stars.” ……… There was once a mama desperate to make it to the other side of the world to see her daughter face-to-face… and though the thrill of the moment could never be eclipsed, she eventually stopped looking at the moon, and forgot …Read More

September 28, 2016 epidermolysis bullosa, Family Stories, September 2016 Feature - Skin Conditions, Skin Conditions 0 Comments

Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), abbreviated as EB, is a rare, genetic disorder that impacts connective tissue. Approximately 200 children a year in the U.S. are born with EB, and it’s known as “The Worst Disease You’ve Never Heard Of”. Children with EB are referred to as “butterflies” due to the fragility of their skin. There …Read More

July 5, 2016 epidermolysis bullosa, Skin Conditions, Whitney 5 Comments

(Alternately titled: Taking a Child with EB to the Beach) Our family loves the beach. The sun, the sand, the salt-water burning in our eyes. The souvenir shopping, the jellyfish spotting, the ritual of going to eat ice cream on our last night of vacation. Taking that first glimpse of the ocean at the end …Read More

September 15, 2015 epidermolysis bullosa, Family Stories, September 2015 Feature - Skin Conditions, Skin Conditions 2 Comments

I grew up in a third world country where the exotic butterflies are exquisite! My favorite had wings like brilliant sapphires on thin blankets of black velvet. They would flit by in glorious beauty and no matter how many times I saw them, they still took my breath away. It is hard to describe something …Read More

September 3, 2015 epidermolysis bullosa, September 2015 Feature - Skin Conditions, Skin Conditions, Whitney 2 Comments

What does life with EB look like? It looks like swinging on swings at the park. Epidermolysis Bullosa is a genetic connective tissue disorder. There are many types and sub-types, each affecting the individual in different ways. Regardless of type or sub-type, one thing that I have noticed about kids with EB, and their families, …Read More

July 5, 2015 epidermolysis bullosa, orphan ministry, other ways to care for the orphan, Whitney 2 Comments

There are adoptive families of all sorts. Families who adopt and have biological children. Families who have only adopted children. Families who adopt more than one over several years. Families who adopt two at the same time. Families who adopt only one. Families who knew from the start that they would adopt one day, and …Read More

March 12, 2015 epidermolysis bullosa, Family Stories, Skin Conditions, Whitney 9 Comments

Our journey as a family into EB adoption started with eczema. True story. Out of the three biological children we already had, two of them had big time problems with eczema. So, when one day I was scrolling down the waiting child list on our agency’s website and saw “dermatitis”, my heart leapt. Dermatitis? I …Read More

March 4, 2015 epidermolysis bullosa, Family Stories, Skin Conditions 3 Comments

When my husband and I began the adoption process, we knew we were open to adopting a child with special needs, but we didn’t have any specific need in mind. We had a very broad medical checklist, and we planned on getting our LID and having our agency match us with a child. But then …Read More