Thursday, April 4, 2013
7 News Features: Caring for Katie
A little girl with a rare disfiguring disorder is back in South Florida for more surgery. Doctors here are still trying to help her have a normal life. 7's Lynn Martinez shows us how this local hospital is Caring for Katie.
Angie Renfroe: "Just hoping and praying that she gets through this."
Doctors believe Katie has Proteus syndrome, also known as the "elephant man" disease.
Dr. Drew Schnitt, Joe DiMaggio Children's Hospital: "The characteristics of Proteus syndrome are that the patients take very unusual forms."
In Katie's case, she was born with an extremely large head, ears and lips. Her cheeks are so heavy they weigh her down, making it almost impossible for her to move.
Dr. Drew Schnitt: "So our goal is to try and get her head to a more normal proportion so she can control her head and have some normal function."
We showed you the results of her first surgery back in December, when doctors were able to reduce the size of her left cheek.
Dr. Drew Schnitt: "We lift all that tissue up like we would do in a regular facelift."
That surgery changed her life. Her dad says for the first time he got to see his little girl move on her own.
Danial Renfroe: "She can sit up now on her own, she's trying to walk in a walker."
But despite Katie's progress, for her mom, every surgery is torture.
Angie Renfroe: "I'm really worried about today, and what the outcome is going to be."
It's hard on the whole family. Fourteen-year old Megan is praying today's operation to reduce the side of her right cheek will make things better.
Megan Renfroe: "You can see that she really wants to do normal things, but it's holding her back."
Inside the OR at Joe DiMaggio Children's Hospital, Katie has several doctors pulling for her. Plastic surgeons work tediously on her face. A specialist is also on hand to make sure that her facial nerve is protected.
Dr. Drew Schnitt: "So we don't injure it and therefore cause the face to be paralyzed."
Three days after surgery, Katie's right cheek is still swollen, but much smaller than before. And although she still can't speak, Katie signs to her dad and claps to the music.
Dr. Schnitt says she is a tough little girl.
Dr. Drew Schnitt: "She's doing great. She really sailed through the operation."
But there is more surgery ahead for Katie.
Dr. Drew Schnitt: "We're going to move on to hopefully reduce her lips, her tongue, her left ear."
For now, she is back at home in Paxton, Fla. surrounded by her family, sitting up on her own.
Angie Renfroe: "One day at a time, a lot of prayer."
Lynn Martinez, 7News.
Doctors say Katie must be monitored very closely because the tissue can grow back. Catholic Charities is helping the family raise money for her surgeries.
FOR MORE INFORMATION:
11 1st Street Southeast
Ft. Walton Beach, FL 32548
Or go to any Regions Bank. Donations can be made to the Katie Renfroe Fund in the name of Danial Renfroe.