Angie, a mother from Florida had given birth to baby Katie Renfroe with megalencephaly, a growth development disorder which causes the overgrowth of the brain. As the girl grows up with the disease, her physical appearance changed that even doctors cannot explain, leaving them all puzzled as to Katie’s real condition.
Katie had suffered with side effects including seizures which made her unable to walk and talk. She was also being feed with the use of a feeding tube.
Wanting to establish Katie’s real condition, the family went to Hollywood, Florida and consulted Dr. Roman Yusupov, a pediatrics genetics and pediatric cleft and craniofacial disorders. Unfortunately, even Dr. Yusupov failed to diagnose Katie saying her case was one in a million. The doctor just committed to closely monitor her development to make sure she was growing healthy.
Dr. Yusupov said, “I have never seen anything like it, she is truly unique and perhaps one in a million.”
“Her diagnosis is very interesting. I think she has what is known as an overgrowth syndrome in which different body parts start to increase in size,” he added.
Katie’s mother said, “At this point, as far as I know, no one knows anything that is wrong with her. They’ve checked her for dwarfism, they’ve checked her for so many things that I can’t even remember – but everything comes back that she doesn’t have it.”
“And if they can’t figure out what she has, they’ll just name it after Katie,” she added.
Because of Katie’s rare condition, she underwent series of surgeries including a brain surgery as early as nine months old. She had her tonsils removed, her feeding tube, downsized her ears, her tongue, two cysts removed from her head and downsized her cheeks for a couple of times.
“But I do not know why her face is the way it is – I do know that when she has surgeries the only thing they move from her face is like fatty tissue.”
Despite of her condition, Katie remained to be a happy child as coming from a big family with seven brothers and sisters and step siblings made her always showered with so much love and care. Katie’s 18-year-old sister, Megan Renfroe also said that her sister loves to do almost anything that any other kid can possibly do.
“She just loves life. She also has a little devious side to her where she likes to try and booby trap the house to see if she can make us fall. And she finds it very hilarious. She has emotions – if something hurts her, she’ll cry about it. If something is funny to her, she’s going to laugh about it,” she added.
Katie also attends school for children with disabilities where she gets to enjoy working on computers and interact with other kids.
As Katie’s condition remains a mystery, her future prognosis is unknown. Her mother, Angie was just grateful that they were able to do their best to make Katie happy as much as they could while Katie gives them back hope through her laugh and smiles. – via Mirror News