Girl with 2 rare disorders begins treatment Monday

Published On: May 17 2013 04:36:27 PM EDT   Updated On: May 17 2013 06:52:27 PM EDT

An 11-year-old girl who suffers from a pair of rare neurological disorders begins treatment Monday.


An 11-year-old girl who suffers from a pair of rare neurological disorders begins treatment Monday.

Several years ago, Kayla Smith was diagnosed with Ehlers-Danlos Syndrome (EDS), a condition characterized by frequent dislocations and slow healing.

In Feb. 2012, Smith was diagnosed with RSD, a neurological disorder that misfires pain receptors. Her brain continually sends pain to her legs even though there is no injury.

Since Smith has been diagnosed, she has been confined to a wheelchair and unable to stand for more than 10 seconds.

Smith and her family travelled to Ohio on May 13, where she will undergo treatment at the Cleveland Clinic's Children's Hospital beginning next week.

"This morning, I spoke to the family and she's in horrific, grueling pain right now. The pain has spread. Not only is it in her legs, it is in her fingers and has spread into her arm and now the whole left side of her body," said Lisa Vera, a family friend. "They are there and it's going well, but she's suffering and she's feeling pain."

Smith's parents took her to the YMCA on Friday, where she went into the pool to get some relief from the pain.

The Smith family's insurance plan originally denied her coverage and care but later rescinded that.

"They were told they received a letter that the insurance rescinded that and they have decided to cover her, which is a blessing," said Vera.

Smith will spend 8-to-10 hours in therapy starting Monday. Her treatment program lasts three-to-six weeks.

"It's going to be a long, drawn-out process and Kayla thrives on the support she's getting," said Vera.

Click here to learn how you can donate to Smith's recovery.

Her mother Shana is starting a blog where you can follow Kayla's progress. Click here to read it.


The views expressed are not those of this company or its affiliated companies. Please note by clicking on "Post" you acknowledge that you have read the Terms Of Service and the comment you are posting is in compliance with such terms. 
blog comments powered by Disqus