The story of Katie, a strong little girl battling a condition so rare, it doesn’t even have a name

The story of Katie, a strong little girl battling a condition so rare, it doesn’t even have a name

Her condition is so rare that experts are considering naming it after her. But in spite of her condition, she's still a happy and outgoing little girl!

Katie Renfroe has been through a lot for someone so young. But even with her unique condition, she still manages to bring her family happiness, and live a relatively normal life.

Her condition doesn't even have a name

At the time, her parents already knew that Katie was not going to be like everyone else. Doctors detected that Katie might be suffering from megalencepahly, a growth and development disorder that affects the brain.

"We found out when I was about six months pregnant with her that she was going to have megalencephaly.

But I do not know why her face is the way it is," her mother, Angie shares.

However, that's only one aspect of Katie's condition. Her symptoms are so unique and have never been seen before, it doesn't even have a name.

Aside from the fatty tissue on her face, which Katie has undergone a series of operations to remove some of the tissue, she also suffers from seizures, and she has to be fed through a feeding tube.

She went through a lot because of her condition

As a result, Katie has undergone numerous operations throughout her life. She even had brain surgery when she was only 9 months old!

Her mum adds, "Since birth, Katie has had her brain surgery, her tonsils removed, her feeding tube, they downsized her ear, her tongue, her cheeks have been downsized several times and she’s had two cysts removed off of her head.

“So yeah, she’s had quite a few surgeries. A lot more than anyone should have had.”

In spite of her struggles, Katie's family is very supportive and her family doesn't treat her any different because of how she looks. Her 18-year-old sister Megan says "I think the best thing about Katie is her personality – she’s very outgoing and wild."

"She just makes the most of what she has and I don’t really think that she knows a difference, she wakes up and that’s who she is,” Katie's mum Angie says.

"I really think that her future is going to be as happy as we can possibly make it and as content as we can possibly make her. We can have the darkest days in the world, but she’ll just laugh or smile and it gives us so much. She just makes us happy."

*This article first appeared on theAsianparent Philippines


READ: One brave dad shares his brave daughter’s journey with Kawasaki Disease

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Written by

Nasreen Majid

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