When Amanda and Jared Abuhl decided to adopt a little girl from Bulgaria with the same rare genetic condition as one of their biological children, they were amazed to see how the love of a family opened her up — and what a delight caring for her would be.
“Mom? When you’re old someday, can I have custody of Anna?”
This question from her oldest daughter made Amanda Abuhl chuckle, and melted her heart at the same time.
“It was such a statement of, ‘I want this kid. She’s my sister and I love her.’ That’s what I took from it,” Amanda says.
And it’s safe to say this is how the entire Abuhl family feels about Anna, who they adopted from Bulgaria in August 2022.
Amanda and Jared already had four biological children when their fifth child, Evangeline, was born with a rare genetic form of epilepsy that causes seizures.
“On the spectrum of this condition, Evangeline’s condition is the most severe,” Jared says. Today, Evangeline is 5 years old and still has about 70 seizures a day. She can’t communicate, eats via tube feeding, and can’t move around or hold her head up on her own.
While they had always wanted six kids, Amanda and Jared decided that with the complexity of caring for Evangeline, having another child just wouldn’t be possible. But then they heard about Anna…
Adopting a Child with Complex Medical Needs
“For me, it was the moment I saw her face,” Amanda says. Adoption hadn’t even been on their radar when they first learned about Anna online — that she was about 1 year old, lived in Bulgaria, had the same exact rare genetic condition as their daughter, and that she needed an adoptive family.
Only about 250 people worldwide have this specific genetic condition, called KCNT1 epilepsy. And because of Evangeline, they Abuhls were already experts in taking care of a child with it. They were familiar with how the disease process worked, Amanda is a nurse and their entire family was already comfortable with caregiving, and they already had an expert medical team of neurologists, dieticians, physical and occupational therapists, orthopedic doctors, ophthalmologist and more.
“I don’t think we would have sought out this experience if it wasn’t for Evangeline,” Amanda says. With five children already, one of whom required complex care, their life was full. But as soon as they saw Anna, they knew that this was something they could do.
Amanda says this wouldn’t have been the case for a child with any other type of medical or special need.
“For example,” she says, “I don’t feel equipped to be the mother of a child with Down syndrome.”
But bringing Anna into their family just made sense.
“This kid needs me,” Amanda remembers thinking, “and we’re probably the only ones equipped to help her.”
So they began the adoption process to bring her into their family.
Adopting Anna from Bulgaria
When the Abuhls expressed their desire to adopt Anna, at first the Bulgarian government was apprehensive. It’s not often that families step up to adopt children with such complex, lifelong medical needs.
But with advocacy from Holt and Holt’s local partner agency in Bulgaria, and the reassurance that the Abuhls were uniquely able to care for a child like Anna, they officially matched with her in the spring of 2022.
Adopt From Bulgaria
Many children in Bulgaria are waiting for a loving, permanent family.
“It’s not an everyday parent who can do this type of love, and who has the capacity to parent a child with a higher degree of need,” says Amanda Colonia, Holt’s adoption case manager for Bulgaria, who worked with the Abuhls throughout their adoption process. “But for those who can,” she says, “it’s amazing.”
The waiting phase can be long and difficult for all adoptive families. But because of her medical condition, there was an additional element of worry.
At one point, they learned that she was in the hospital with pneumonia. This is a common risk for children with special needs in orphanage care when they are fed incorrectly and then choke and aspirate on their food — causing an infection. At this point, the Abuhls felt the urgency of adopting her so that she could get the high level of medical care that she needed.
“It’s not an everyday parent who can do this type of love, and who has the capacity to parent a child with a higher degree of need. But for those who can, it’s amazing.”Amanda Colonia, Adoption Case Manager for Bulgaria
“For children who have this genetic condition, or other complex medical needs, the caregivers do the best they can,” Amanda Colonia explains. “But they have all types of children with all types of needs, and none of the caregivers know the specifics of a genetic condition like Anna’s.”
Thankfully, Anna recovered from pneumonia and was back at her orphanage ten days later. But even the best orphanage is no substitute for the care that a family can give — especially for children with medical needs.
“This particular family is a great unique example of a family opening up their hearts to adopt a child with lifetime care needs,” says Amanda. “And they were so blessed in the process.”
The adoption grants they received were one of these particular blessings.
Help From a Families Not Finances Holt Adoption Grant
“We needed to be ready for Anna as soon as she became available [for travel],” says Jared. But, there’s so much money involved in the adoption process, that we couldn’t have done it without the grants. The Holt grant was especially impactful.”
In addition to grants from other organizations, the Abuhls were awarded a $10,000 Holt Families Not Finances grant to help fund their adoption. This specific grant exists for families just like them who are adopting children with complex special and medical needs.
In the end, they were able to fund one third of their adoption through personal fundraising with friends and family, and the remaining two thirds through adoption grants such as Families Not Finances.
And because of this, they were able to travel to Bulgaria to get to Anna as soon as it was possible — in August 2022.
Opening Up With the Love of a Family
Because of Anna’s medical needs, Amanda and Jared’s time in Bulgaria was very short — just four days compared to the typical ten days.
“It’s hard to describe how it felt to hold Anna in our arms for the first time,” Jared says. But after a whirlwind trip, they were at the orphanage with Anna, completed their work at the embassy, and then headed with her back to their hotel.
The first thing Amanda did when they got there was give Anna a bath, just as if she were a newborn.
“I just sat with her and held her,” Amanda says. Not knowing exactly what she would need, they brought as many medical supplies as they could fit in their suitcase. They saw Anna’s NG tube for tube feeding was too large for her, so they replaced it with a smaller one that would be more comfortable. And they began to get to know her.
“Our older daughter has seizures every 5 to 10 minutes, and we quickly realized Anna was not. We were like, ‘This is very strange!’” Amanda says. Then, to their amazement, she rolled over in her crib that night.
“All of the reports we had about her painted a picture of a child who functioned at about a 6-week-old level, very similar to our older daughter,” Jared says. “We were told not to expect a social smile, movement or much awareness of her surroundings.”
But Anna soon showed she was more developed than they dared to hope.
As they flew home with her to Omaha, Nebraska, somewhere over the Atlantic Ocean Anna looked up into their eyes and smiled.
Something New Every Day
In the just three months since she’s been home, Anna has now gained over six pounds. She had a G-button placed in her stomach as a more direct way to receive her tube-feeding — ensuring that she receives adequate calories and fluid every day. With this help, she’s catching up on some milestones — skills that Amanda and Jared were told were impossible.
“We joke that, kind of like an infant, she does something new every day,” Amanda says. “We are just astounded by what stimulation and constant love and nutrition is doing. Anna has started to open up like a delightful flower.”
Anna now wears glasses to help correct her vision, and she’s about to get orthotics on her legs to help them straighten and develop normally. Her therapists are all amazed and excited by her potential, and even hope that she may walk, talk and eat without a tube someday. Anna is almost 3 years old, and while Amanda and Jared expected her to be at the developmental level of a 6-week-old, she’s closer to the 6-9-month range, which astounds them.
“I guess right now I feel like the sky is the limit!” Amanda says. “Let’s just see what she can do and do therapy so that she can keep thriving.”
While there are a lot of unknowns with the type of condition she has, Amanda and Jared are prepared to care for Anna for her entire life.
“We have you until we don’t have you anymore,” Jared says about Anna. “And while we have you, let’s grow you up and develop you. We were expecting somebody who just laid around. And we were OK with that! But this is pure delight and joy.”
The addition of another child with complex medical needs has definitely brought more complexity to their family. And some things are just too difficult for them to do, like travel together. But Anna’s sweet interactions and the unexpected ways she’s developing in their care has brought so much joy, too.
A Caregiving Family
In addition to the medical care and therapy she’s receiving, the love and attention Anna gets every day from her parents and five siblings is making a huge difference.
“We talk a lot about how God has gifted us with these two beautiful daughters who are made in the image of God,” Amanda says. “They reflect His glory. And every one of our big kids understands this.”
The other day, Anna sat on one of her brother’s laps while he played video games. She made loud noises the whole time, and he just held her, lovingly letting her be a part of what he was doing.
She’s always with one of them, being carried around, smiled at and nurtured.
“There’s a term for our family,” Amanda says, “and it’s called being a caregiving family. Our big kids are involved with both of their little sisters’ care. Anna smiles at her siblings and they smile back. It’s hard not to respond to such a delightful little girl.”
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