Epidermolysis Bullosa: “The Worst Disease You’ve Never Heard Of”

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

Not Really a Special Need: Adopting a Child with Albinism

September 26, 2016 adopting a boy, albinism, Family Stories, nystagmus, September 2016 Feature - Skin Conditions, Skin Conditions, TVI, vision issues 0 Comments

No Hands But Ours is focusing on skin conditions this month. My son has albinism, but I hesitated to write our story. Heck, our dermatologist has discharged us. If my son ever has a suspicious mole or a serious burn, we’ll go back. Otherwise, I am capable of – the dermatologist pointed out – totally …Read More

Our Fair-Haired Hero: Adopting a Child with Albinism

September 17, 2016 albinism, Education, Family Stories, older child adoption, public school, September 2016 Feature - Skin Conditions, Skin Conditions, TVI, vision issues 0 Comments

Her name was spoken to us before we even knew who she was…. We had adopted from China in 2011 and just started the process to adopt again. One night I let myself start thinking about names for our new little one and after spending more time than I care to admit looking at baby …Read More

More than White Hair: Adopting a Child with Albinism

September 14, 2016 albinism, Family Stories, September 2016 Feature - Skin Conditions, Skin Conditions 1 Comments

We didn’t plan to adopt a child with white hair. I wouldn’t assume many do when they consider adopting a child from China. I fell in love with our son Noah’s face and short description one night while perusing the waiting children on RainbowKids. Adoption was something my husband and I had prayed about, discussed …Read More

Beautiful Scars: Adopting a Child with a Congenital Nevus

September 7, 2016 birthmark, Congenital nevus, Family Stories, giant congenital nevus, medical needs checklist, medical waiver, referral, September 2016 Feature - Skin Conditions, Skin Conditions 4 Comments

When my husband and I first started looking into adoption, we were told that because of my epilepsy, we could only apply for a special focus child. In Adoption circles, Special Focus means either that the child has more than one medical condition, or has a more severe medical condition. Sometimes the label is given …Read More

Journey to Gabriel: Adopting a Child with Ichthyosis

September 2, 2016 adopting a boy, Family Stories, ichthyiosis, September 2016 Feature - Skin Conditions, Skin Conditions 7 Comments

I love adoption. It’s beautiful. It’s messy. It’s hard. It’s the big stuff — hope, joy, grief, love, sacrifice… wrapped up in one. It makes a world of difference to a child in need. It builds families. It’s an example of God’s handiwork. And being part of anything God does is just, well, awesome. When …Read More

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