Even zebras need guardian angels.
At just 2 years old, Adaline Karg has already found hers.
ADALINE KARG
Born with a rare medical condition that prevents her body from processing protein properly, Adaline has been called a rare breed by the medical specialists who treat her, the girl’s mother Julie Karg says.
“In the medical world, our daughter is known as a zebra from the saying ‘When you hear hoofbeats, think of horses, not zebras.’ She is one of the rare zebras,” the mother said.
Adaline began experiencing problems days after her birth. Doctors began following the old adage that cautions medical students against jumping to rare diagnoses without first investigating the more common causes. Hers, however, was one of those rare cases — a genetic disorder called argininosuccinic acid lyase deficiency, or ASALD.
The disease prevents Adaline’s liver from properly processing proteins, which allows toxic ammonia to build up in her bloodstream, potentially causing brain damage or death.
At 17 days old, the baby, who was born prematurely, was also diagnosed with auditory neuropathy, a hearing disorder that causes deafness. There is no definitive proof it is related to the disease, but could have resulted from it, Mrs. Karg said. Regardless, Adaline underwent bilateral cochlear implantation surgery to help correct the hearing loss.
She has lived with the disease and hearing loss for the past two-and-a-half years, but they have entailed more than 400 doctors appointments and multiple hospital stays along with a highly restrictive diet.
Most recently, the family, which includes father Mike Karg and 19-year-old sister Grace, traveled to the University of Pittsburgh Medical Center Children’s Hospital to meet with a liver specialist, who recommended a transplant.
Mrs. Karg put a request out on social media not knowing what kind of response she might get.
That’s when Adaline’s angel heeded her own call.
Check out Adaline’s Liver Angels on Facebook.
The help of an Angel
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Angel Payne holds Adaline. |
Angel Payne, a rural Belle Center resident and coordinator of the Logan County Solid Waste District, first met Mrs. Karg during an eighth-grade class trip to Washington, D.C.
Mrs. Payne was a parent chaperone when her oldest daughter took the trip while Mrs. Karg, a Benjamin Logan Middle School teacher, was a staff chaperone.
They both had new Nikon cameras they were learning to use on the trip and their daughters, close in age, shared a common interest in raising goats for the fair.
“We just connected and had a lot of fun on that trip,” Mrs. Payne said. “Looking back at it now, it’s like it was all laid out.”
The friendship the mothers began on that trip followed them back to Logan County and their families became closer over the years.
Mrs. Payne adopted a younger daughter in the years since and said she knew what it was like for her friend to enter into motherhood again later in life.
“Jeremy (Payne’s husband) and I adopted a little girl several years ago so I know what it’s like to be a mom again for a second time,” she said.
A family’s decision
After reading her friend’s post on social media, Mrs. Payne began investigating on her own whether she might be able to aid the family.
It turns out she had the right blood type, shape and size of liver, which are the primary determining factors for liver donations, Mrs. Payne said. From there, it was her decision whether to donate.
“We had a lot of conversations about it as a family when I first started meeting with the genetics team,” Mrs. Payne said.
But ultimately it came down to her responsibility as a parent.
“As a parent, I have a huge sense of empathy,” she said. “I am a mom myself and I know what it is like to watch my own children struggle with illness even things not as serious as this. As a parent, I would want someone to help especially if it is something that can be fixed.”
Her husband agreed with her decision.
“I asked myself, ‘If this was our child, what would I do?’” Mr. Payne said. “If this was our family, we would want someone to do it for us.”
Adaline Karg, the 2-year-old girl diagnosed with a rare and life-threatening disease, is surrounded by her donor family, Angel and Jeremy Payne, left, and parents, Julie and Mike Karg, right. (EXAMINER PHOTOS | REUBEN MEES)
Read complete story in Saturday’s Examiner.
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