Thursday, December 13, 2012
7 News Features: Caring for Katie
A little girl born with a rare disfiguring disorder was told by doctor after doctor they couldn't help. But one South Florida hospital is stepping up and "Caring for Katie." 7's Lynn Martinez brings us their story.
Angie Renfroe: "It's fun. We don't get bored."
But it's their sixth child Katie, who changed their life.
Angie Renfroe: "When we went in to get our second ultrasound they told us her head was shaped oddly."
Doctors warned them Katie would be born with major deformities, but Angie still prayed to God to protect her unborn daughter.
Angie Renfroe: "If you give her to us we'll do everything in our power to raise her and take care of her."
Katie was born with massive cheeks and ears. From birth they weighed her head down and forced her mouth to stay open.
Mom doesn't see any deformities, only her precious daughter.
Angie Renfroe: "She's the most beautifulest thing in the world. Yes she was, kiss, yes."
Katie is now four and doctors are still trying to diagnose her.
Dr. Drew Schnitt: "In this case, she has massive overgrowth of the soft tissues of her cheeks and neck."
Doctors believe she may have proteus syndrome.
Dr. Drew Schnitt: "The characteristics of proteus syndrome are that the patients take very unusual forms."
One of the most famous cases was Joseph Merrick also known as the Elephant Man. Right now, there are only 100 known cases on the planet.
For Katie's parents, the hard part has been finding someone to help.
Angie Renfroe: "I'll go wherever we need to go. I'll go to the ends of the earth."
They were turned away by several hospitals and doctors, but recently they piled in their van hoping one South Florida hospital would be the answer.
They drove from their home near Pensacola to find Dr. Drew Schnitt at Joe Dimaggio Children's Hospital.
Dr. Drew Schnitt: "They just showed up in my office one day. I had no idea what I was going to see."
He knew helping Katie was going to be a challenge so he brought in plastic surgeon Christopher Brooks.
Dr. Christopher Brooks: "It's very rare and I actually had never seen it in my training."
The team embarked on a tedious 10 hour surgery.
Dr. Christopher Brooks: "The big challenge was to remove as much of the tissue as possible without disrupting the nerve that controls the muscles to her face."
The main goal: Reducing the size of katie's cheeks
Danial Renfroe: "Made it difficult for her to speak, difficult for her to eat and even difficult for her to breathe."
Her first surgery was a success. Katie's parents couldn't be more grateful.
Angie Renfroe: "Words just don't, they don't say enough about what they've done and how good they are."
There are still many obstacles ahead for Katie because as she grows so could her deformities.
Danial Renfroe: "People automatically want to look and stare which is very psychologically damaging."
But when it comes to her family no one sees her as different.
Danial Renfroe: "We don't treat her differently than we do our other kids."
And even though she can't speak, she has her own language and her family hears her loud and clear.
Angie Renfroe: "Daddy does a good job, he certainly does, he's a good daddy."
Katie will need more surgeries. Catholic Charities is trying to help the family raise money to get that done. We've got the details on our web site at www.wsvn.com
FOR MORE INFORMATION:
How to Help Katie:
Checks can be made out to Angie Renfroe & sent to:
11 1st Street Southeast
Ft. Walton Beach, FL 32548
Or contact Regions Bank:
Tel: (800) 734-4667