A Day In The Life Of Katie, The Girl No Doctor Can Diagnose

BarcroftTVPublished: August 31, 2017789,035 views
Published: August 31, 2017

Nine-year-old Katie Renfroe suffers with a condition so rare that it doesn’t even have a name. She was diagnosed with megalencephaly at birth, a growth development disorder characterised by the overgrowth of the brain. But that diagnosis does not explain the other symptoms that the little girl experiences and doctors have said her mystery condition is so rare, they are unable to identify it.

Katie’s mother Angie Renfroe has been awaiting a full diagnosis of her daughter ever since her birth and doctors have started to discuss the possibility of naming the unknown condition after Katie. The Florida resident said: “Katie is very rare – she has not been diagnosed with anything and they’re still trying to find out what she has. “We found out when I was about six months pregnant with her that she was going to have megalencephaly - a growth development disorder where an infant’s brain is abnormally large. 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.”

When Katie was first born, the family traveled to Hollywood, Florida to visit doctor Roman Yusupov – a specialist in pediatric genetics and pediatric cleft and cranio-facial disorder. But unfortunately, he was unable to diagnose Katie and has continued to monitor her progress since then. He said: “I have never seen anything like it, she is truly unique and perhaps one in a million.” Despite her disadvantage, Katie goes to a school for children with disabilities – but she is able to work on the computers and of course get involved in circle time with the help of her favorite teacher.

While Katie did indeed show symptoms of megalencephaly (also known as macrencephaly), she also exhibited signs nobody had ever observed or noted in an infant before, leaving doctors baffled and her parents worried. Her entire head and face are far, far larger than other nine-year-old children, and extra skin grows on top of her cheeks, giving them that mottled brown look.
There are other symptoms, too. Beside the obvious facial deformities, Katie can neither walk nor talk, and she suffers from seizures of varying intensity. While the brave little girl has undergone numerous surgeries over her short life – starting with brain surgery at just 9-months-old.

The result? While Katie has been tested for every condition and syndrome under the sun, including dwarfism, doctors still have no idea what she has. Most believe they’re witnessing a brand new condition, and predict that this one will eventually be named after Katie.

Also one in a million? And she is never short of care at home, coming from a large family with seven biological brothers and sisters plus step siblings. Watch the video to see how Katie’s parents and numerous brothers and sisters handle her condition and her uncertain prognosis, and get her through every day smiling and happy. If you have a similar story, don’t forget to share it with us!

Videographer / director: Ryan Vanderploeg
Producer: Danny Baggott, Ruby Coote
Editor: Jack Stevens

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    Comments

    12 comments

      • 5 rumbles
        Akg · 30 weeks ago

        Maybe you should have been. That's a disgusting thing to say. Degenerate

        • 2 rumbles
          cvardi · 29 weeks ago

          Katie is different but God loves all of us.

      • 0 rumbles
        Uncommontreasure · 20 weeks ago

        Sounds like a troll response. Stay in your dark corner and hide behind your screen because you don’t belong with the rest of society.

    • 6 rumbles
      cvardi · 29 weeks ago

      Yes, Katie was born different but I blame all people who might call her a "degenerate". Her parents and Katie's sister do have an unconditional love for her and Katie deserves it. Thank you for sharing the life of this wonderful family.

    • 3 rumbles
      Cpfaff · 21 weeks ago

      What a beautiful family. She is blessed to have such a supportive family and she herself is a little blessing. This definately had me in tears.

    • -1 rumbles
      lariel · 21 weeks ago

      this poor child. not to be mean or insensitive, but this is why they do fetal screenings. it was incredibly cruel and selfish for the parents to let this little girl be born. they were only thinking of themselves and not her or her quality of life. who will take care of her when they’re gone? nobody deserves to live like this. so so sad.

      • 3 rumbles
        Escherer · 21 weeks ago

        You ought to be ashamed of yourself for letting those words come out of your mouth. How dare you judge these parents or try to tell them how to live their lives. They love all their kids and Katie has a wonderful circle of support with all of her siblings who love to care for her.. Why don't you ask for forgiveness for saying that a mom and dad should murder their child??!!?? It not your life and Katie is loved and loves her family.. Why don't you be on the lookout for a new heart that is not so cold..Katie is a sweet child and a bit of wonder in a world of evil and inconsiderate people. Now you go and search your heart.. her family deserves a pat on the back for the love they give her..

        • 1 rumble
          Judi55 · 21 weeks ago

          Well said! :-)

      • 1 rumble
        Dona18 · 20 weeks ago

        Agreed

      • 0 rumbles
        Caramelma · 18 weeks ago

        Don’t let these pro-lifers get to you. You are speaking the truth. I would have had an abortion too.

    • 1 rumble
      Uncommontreasure · 20 weeks ago

      Blessings to your family.