By Wendy Corr, Cowboy State Daily
Sarah Witbrod embraces her huge, busy, diverse family with open arms and an open heart. Eight children ranging in age from 16 (almost) to 2 keep Sarah and her husband, Tony, on their toes.
But it’s their youngest two who get the most attention these days – 3-year-old Juniper and 2-year-old Caius.
The two little ones, adopted from Ukraine at the beginning of Russia’s invasion, both face lifetimes of challenges.
Caius, who is afflicted with arthrogryposis, has little use of his arms and no use of his legs. And tiny Junie was recently diagnosed with a terminal illness.
“She doesn’t grow,” Witbrod told Cowboy State Daily. “She hasn’t really grown since we brought her home (in March).”
Adopting Special Needs Children
When Tony and Sarah, who are from Douglas, first chose the Ukrainian orphans, they knew both have health issues.
“When you have a biological child, you don’t get to pick medical – it’s kind of be a ‘get what you get’ situation,” said Sarah. “But in this situation, we chose medical needs adoption.”
Caius’ disabilities are very visible – he has little use of his hands, two club feet and has required several surgeries since coming home for internal organs that haven’t developed correctly, with more surgeries in his future.
But Junie’s health problems were more hidden.
“We knew she had VACTERL association,” said Witbrod, referring to a disorder that affects many body systems. One of the symptoms is limb differences – in Junie’s case, missing thumbs.
“You would never know it from meeting her, because that girl can get into everything,” said Witbrod. “It’s not slowing her down in the slightest.”
When Junie suddenly began bleeding from her gums last month, Sarah and Tony took her to the emergency room. The bleeding eventually stopped, but the questions didn’t.
After multiple visits with the doctor, and finally meeting with a geneticist, Junie was officially diagnosed with a genetic inherited condition called Fanconi anemia, or FA.
“The No. 1 physical marker is absence of thumbs,” said Witbrod. “And then small stature, small eyes, small head and odd coloration on the body, like a tanned appearance.”
The disease, a genetic mutation that affects the ability of DNA to repair itself, leads to bone marrow failure and aplastic anemia.
“The doctor we saw said that it’s a head, shoulders, knees and toes disease,” said Witbrod. “It means that it affects every single aspect of her body. It affects her blood, it affects her organs, it affects her eyes, it affects her … everything.”
Witbrod said Junie has malformations of her esophagus, spine, kidneys, hands, skin, endocrine and gastrointestinal systems.
From the beginning of their marriage, Tony and Sarah knew they wanted to adopt children from foreign countries.
Their oldest Lillian (who will turn 16 on Tuesday) was adopted from Guatemala. Micah (13) and Rita (12) were spirited out of the Democratic Republic of Congo in the midst of a dangerous conflict in that African country.
Just a few years later, Sarah and Tony welcomed biological children Olive (8), Thomas (6) and Ivy (4) to their expanding family – but they weren’t done.
In February, after months of red tape, the couple traveled to Ukraine, which had traditionally been considered a stable adoption country.
Sarah and Tony went to court to finalize the adoption process Feb. 22, picked up their children from the orphanage Feb. 23 — then woke up to bombs Feb. 24.
With the help of Ukrainian friends (one of whom was killed in the first week of the war), the four made it out of Europe, only to face the fight of little Juniper’s life.
‘The Bomb Will Eventually Explode’
Sarah said that Junie will eventually require a bone marrow transplant, but when that will be is unknown.
“FA is like living with a bomb inside of you,” she said. “We know the bomb will eventually explode, but we don’t know when.”
Sarah explained that Junie’s bone marrow will fail, so they are closely monitoring her. She said a bone marrow transplant will essentially “fix” the blood issues she is having, but because her DNA can’t repair itself, “That makes Junie 700 times more likely to get cancer than someone without FA,” said Sarah.
There is no cure for Fanconi anemia.
“We do not know when her body will need major medical intervention,” said Sarah. “We do know that eventually she will – and we will fight this with everything we have.”
Without hesitation, Sarah said even had she and her husband known the extent of Junie’s medical complications, they would brave the war again to give she and Caius a loving home.
“Children belong in families,” she said, “and I would fight to the end for any child in any orphanage in any situation.”
For now, the Witbrods are waiting and watching. A surgery to repair one of Junie’s major medical issues was cancelled because “there isn’t a reason to prepare her for an adult life,” said Sarah.
But she said she and Tony have no regrets.
“We thought that what was wrong with her was much easier to manage,” said Sarah. “But we got Junie, and that’s what our goal was. And now we will walk this path with her so she doesn’t have to do it alone.”