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 my husband and I brought two toddlers home from Russia in 2005, I knew I wanted to adopt again… So many children without families. I couldn’t take it. And I love kids, so why not parent one more? My heart ached.

“Just one more Lord. Please. I’m willing. I want to go. Please Lord. Send us again. Send us back to Russia. Please say yes.”

But, for ten years, God didn’t say yes. He actually said no. Big nos. Like slam the doors shut, and throw away the keys kinds of nos…

a job loss for Dan…
a cancer diagnoses for me…
Russia closing its doors to international adoption…

“Oh my heart hurts, Lord. I don’t understand why your answer is no.”

A lot of “whys” floated around in my head, until I guess I accepted that the answer was never going to be yes. Of course, I should be thankful for the two children we already had. And I was. “Thank you Lord for these two.”

And so it went. Life was busy. Crazy busy actually. And then, after ten years, it happened.

In February of 2015 everything was going great. Our Russian kiddos were 10 1/2, and were becoming more independent. Dan had a steady job working from home. I was cancer-free… Alone in our kitchen, I entertained a thought — maybe we should do it now. My heart skipped a beat.

“Lord, is this You? Are you saying yes?”

And I felt the kind of big, big joy that meant it was Him, and that He was saying yes. His answer hadn’t been no after all. It had actually been “not yet.” I went downstairs to my husband’s office.

“I want to adopt again. I feel God is calling us to adopt again. From China.”

All systems were go. I felt a huge sense of urgency, and flew through the paperwork and fundraising. One of the most challenging tasks was filling out our agency’s medical conditions checklist (MCC). We decided we wanted to adopt a toddler boy with minor or correctable special needs. The MCC contained a long list of medical needs, and our job was to research each one, and check off each need we felt we could handle. We put a lot of energy into that list. By the time we completed it, we felt it was a pretty accurate, and surprisingly broad, list.

In the midst of the paperwork frenzy, a few ladies from our agency traveled to China to visit the children they would be trying to place with forever families over the next several months. They shared pictures of some of the precious faces they had seen — sort of a “cuteness parade” without any written descriptions about the children. All the children were beautiful in their own ways, but the very first picture caused me to catch my breath. A sweet baby dressed in pale yellow, with big brown eyes. My mom saw the pictures as well.

“Oh Mom! That first one! Do you think that’s a boy or a girl?”

“I think that’s a girl. Oh Amy, maybe you should adopt a girl!!”

Well… we just really wanted a boy.

Several weeks went by, and a friend encouraged me to ask our agency about that special baby, who just so happened to be a boy! I sent an email to our agency’s waiting child specialist, and she excitedly replied that just the night before she had been holding this little boy’s picture up next to ours, wondering if she should ask if we’d be interested in reviewing his file. But she hesitated because his special need wasn’t on our medical conditions checklist. My heart sank a little. I was pretty sure if his need wasn’t on our list, we hadn’t felt comfortable with it.

“Congenital Ichthyosis,” she said. “It’s a skin disorder.” She spelled it. “I-C-H-T-H-Y-O-S-I-S”.

I agreed to research it a bit more, and get back to her. What I read made me nervous. “No cure, 28 different types, peeling skin, redness, itching, heat intolerance/inability to sweat, extremely rare, time consuming care…”

I zoomed in on the pictures of this sweet baby, and sure enough, I could see brown scales on his hands, and lightly peeling skin pretty much all over. Some of his skin had a waxy appearance, especially his hands, which also appeared to be cracking. But overall his skin condition appeared to be mild, at least in comparison to pictures I’d seen on-line. We decided to have his file reviewed by an international adoption pediatrician.

I’m so glad we did. We had a ton of questions.

The IA pediatrician sent our boy’s files to the FIRST Foundation for review, and to a pediatric dermatologist. They gave us lots of good information. Some of it seemed scary at the time. Some not so scary. I wondered if with good skin care, how normal could his skin really look? The doctor told us that his skin will never look completely normal, but it should look pretty acceptable!

I hung my hat on that, and decided to try not to worry about ichthyosis, and to enjoy the journey. Deep down I think I knew all along this was our child.

We accepted his referral.

In February 2016, my husband and I boarded a plane to Beijing. We had the privilege of picking up our son directly from the group foster home where he was living. We were greeted by two of his caregivers in the parking garage, and they walked us upstairs. Meeting each of our children for the first time has always been a surreal experience. If I close my eyes, I can smell the hallways, hear all the subtle noises… 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.

Flash forward five months.

Gabriel William Hultquist turned two years old last week. He’s wonderful. He’s grown four inches since he came home. He says over a hundred English words. He’s happy, healthy, and loved by pretty much everyone he meets.


The day to day care of his skin is a little time consuming, but it’s not rocket science. He receives two baths per day, during which his skin soaks up water like a sponge. It’s kind of amazing. With the kind of ichthyosis Gabe has, his skin regenerates much faster than it sheds, so it builds up, making it difficult for oil or sweat to reach the surface.

So I lather him with lotion from head to toe immediately after each bath, and apply an ointment called Aquaphor to his driest areas, which happen to be his hands, feet, and shins. (On a side note, the makers of Aquaphor, Beiersdorf, will provide a free lifetime supply of Aquaphor to people with ichthyosis, simply with a doctor’s note!)


Mid-day, Gabe needs a bit of a moisture boost, so I apply regular hand lotion wherever he looks dry. Since Gabe does have heat intolerance, we have to make sure he doesn’t overheat. When he gets hot, his face turns red like a tomato, and he feels hot to the touch, without a drop of sweat on him. We keep him indoors during the hottest part of the day, and generally hit the pool after dinner. He loves to swim!

There are cooling vests that people with heat intolerance can wear that have little pockets for ice packs. I bought Gabe one, but it’s way too big — I guess we’ll just figure this stuff out as we go. Our efforts have been rewarded, and Gabe’s skin looks so much better than it did in China. Except for his hands and feet, it’s now hard to tell he has a skin condition.


This morning Gabe was standing at my feet, babbling emphatically as if he wanted something, but didn’t have the words he needed to express himself. I bent down, and he planted a big kiss on my cheek. It was beautiful. It was messy.

God answered my prayers. We have another son. Gabe has a family. He, and his adoption, are examples of God’s handiwork. And being part of anything God does is just, well, awesome.

– guest post by Amy; photos by EmVision Photography​

7 responses to “Journey to Gabriel: Adopting a Child with Ichthyosis”

  1. Thank you so much for sharing your beautiful journey! God caught us by surprise with our daughter Rosy, adopted from China at age 7 1/2. She has lamellar ichthyosis, and it isn’t a need that we would have even considered, but then we saw her face and felt God’s big YES. She’s been with us for 3 years, and she is doing great. Hers is very noticeable, but she is happy and healthy and such a joy. We also have our difficult days, our bad-skin days and our I-hate-ichthyosis days, but God has his fingerprints all over this and He is so faithful.

  2. Becky says:

    You are very special people and make the world a much better place. Sometimes I despair but read your posts and uplifted. Thank you for being the people you are. We ALL need you. XO.

  3. Faye Henderson says:

    God has blessed you family with 3 Beautfiul children. So Glad Gabriel came to live with your family . He is a Precious little guy.

  4. Michelle (Runyan) Ignazio says:

    This beautiful story just brought me to tears! The way that God works..the way that you never gave up and just kept trusting God. The love that you give. The hope that your story inspires. God’s timing is perfect.

  5. Daniellle says:

    Such an inspiration Amy and a wonderful journey! I look forward to experiencing more of the future journey!

  6. Bonnie Trunk says:

    Are you Betsy and Sams daughter? I knew them many years ago and thru FB has reconnected. I am adopted and love your story and Gods message. You have a wonderful and blessed family!

  7. Laura says:

    Such a great story, and I can relate! I adopted Joshua from China in Sept 2015, also diagnosed with ichthyosis. So much to learn, yet not rocket science as you describe. I’m so glad I said yes to my little boy. Can’t imagine my family without him.

    Thank you for sharing!

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