Topeka Teen Suffering From Rare Disease Needs Community’s Support

A Topeka teenager is suffering from a rare disease and her family is asking the for the community’s support.

Ashley Newman is a Highland Park sophomore. She is 16-years-old, but her mother says her brain has the mental capacity of a 4-year-old.

Topekan parents, Steven and Karen Newman say when their daughter Ashley was born, they noticed something was wrong.

„She didn’t cry like a normal baby, she didn’t kick her legs like a normal baby,“ said Steven.

At 10-months-old, Ashley was diagnosed with a rare disease called Alternating Hemiplegia of Childhood, a neurological disorder which causes paralysis on parts of her body.

Now, 16-year-old Ashely has been in Children’s Mercy Hospital in Kansas City where recently she had an 11 hour seizure and had to be put in a medically induced coma. Since then, she has been in a full body paralyzed state for 7 weeks.

„And right now with her being paralyzed, it’s just so hard. The little things that people take for granted she’s not able to do,“ says Karen.

Ashley is unable to eat, drink, walk, talk, move her arms, legs and she has not even been able to hold up her own head. She currently has been fed through a g-tube.

„It’s been a really really hard time. A lot of tears have been shed, a lot of prayers have been said,“ said Steven.

Her parents say she uses a wheelchair everyday and their house is not handicap accessible. They need a ramp put into place. They have received some donations but it hasn’t been enough. They hope they can raise enough money so their house can be ready for Ashley to come home.

„She’s had a smile on her face the whole time, she is amazing,“ says Karen.

Doctors say they don’t know when Ashely can come home. It may take 30 or more days. The Newman’s set up a fund called „Project Ashely Come Home“ at CoreFirst Bank and Trust which has 13 Topeka locations.

There are fewer than 800 known cases of Alternating Hemiplegia of Childhood.

A video with the story can be found HERE