September Special Needs Focus (and Favorite Family Stories): Skin Conditions

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 much of this through our Family Stories. In addition to our regular content, each month (except January) we feature Family Stories focused on a specific group of Special Needs. Here are some links from previous years organized by category:

February: Heart – 2017 || 2016 || 2015
March: Blood Conditions – 2017 || 2016 || 2015
April: Central Nervous System – 2017 ||2016 || 2015
May: Vascular – 2017 ||2016 || 2015
June: Orthopedic – 2017 || 2016 || 2015
July: Craniofacial – 2017 || 2016 || 2015
August: Infectious – 2017 || 2016 || 2015
September: Skin Conditions – 2017 || 2016 || 2015
October: Developmental – 2016 || 2015
November: Urogenital – 2016 || 2015
December: Sensory – 2016 || 2015

September is our month to focus on special needs involving the skin. And all month long, we’ll be featuring family stories of children with needs like albinism, congenital nevus, epidermolysis bullosa and ichthyosis.

Over the years, many family stories related to these special needs have been shared. And – during this month focusing on skin conditions – we wanted to take a moment to look back at just a few of our favorites.

Let’s go.



“We travelled to Inner Mongolia in March of 2014. Our daughter was more amazing and beautiful than we ever imagined… So grateful we walked in faith and said “Yes!” to special needs adoption and “Yes!” to our beautiful daughter.”Carinda 8/13/15

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Albinism



Albinism: a group of inherited conditions – people with albinism have little or no pigment in their eyes, skin, or hair.

In this post from 2015, Lee Ann shares their fears in the unknowns of adopting a child with albinism and how that has changed since their daughter has been home.

“She has brought so much joy and love and laughter to our lives (and has made it crazier too!). We didn’t know what we had been missing!” – Lee Ann

Read more NHBO posts on this special need here.

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Burns



Burns: injuries caused by exposure to heat or flame.

Jessica shares the story of bringing home their daughter, Cleo, whose special need was burns.

“Other than surgery times, a few extra appointments and pressure garments, daily life is quite typical. She attends pre-school, swims, talks a lot, rides her bike, bosses around her brothers and sister, sings loudly, goes on nature walks to collect little things, talks a lot (did I say that already?), tells me I’m the best Mom in the whole wild west, laughs… you name it, she can do it.” – Jessica

Read more NHBO posts on this special need here.

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Congenital Nevus



Congenital Nevus: a congenital melanocytic nevus can sound like an overwhelming special need. Simply, it is a birthmark (nevus) present at birth (congenital) that is made up of melanin or pigmented cells (melancytic). A nevus is often described based on the size of the birthmark: small, large, or giant.

Michelle recounts the roller-coaster journey to bring home their daughter with a giant congenital nevus.

“She is such a joy to us! We love her just the way she is, birthmark, scars and all… It’s our prayer for her that she will grow to continue to be confident in her skin.” – Michelle

Read more NHBO posts on this special need here.

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Epidermolysis Bullosa



Epidermolysis Bullosa: or EB, is a very rare genetic connective tissue disorder. EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB.

Whitney confesses her initial fears on taking her daughter with EB to the beach, one of her family’s favorite pastimes, and that she maybe ought not have been so worried after all.

“When we brought our daughter home from China in February of 2015, we knew that our beach days as we had known them would need to look a little different. EB is, after all, a skin condition, and being at the beach with EB was going to require some different approaches to make it something she could enjoy.” – Whitney

Read more NHBO posts on this special need here.

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Ichthyosis



Ichthyosis: the ichthyoses (plural) are a family of genetic diseases characterized by dry, thickened, scaling skin. Because each form of ichthyosis is rare and there is an overlap of clinical features among disease types, the medical community disagrees about clear definitions and classifications of its many forms.

Amy shares how, after thinking they might not ever be able to adopt again, they brought home Gabriel, a little boy with ichthyosis.

“When the door opened, he was right there! All smiles! Pure joy! He went to me easily. In my arms I finally held our sweet boy. I don’t think I even noticed his skin. I just loved him.” – Amy

Read more NHBO posts on this special need here.

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If you are parenting a child from China with a special need and would like to share your story on No Hands But Ours, let us know. Just complete this short form and we’ll be in touch with you soon.



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The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.