Living with MPS, a rare illness that may result in death - WOWK 13 Charleston, Huntington WV News, Weather, Sports

Persistence pays off for family living with rare illness MPS

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The news that a special needs West Virginia boy was discovered dead in his home sent waves of shock and sadness throughout this area, but perhaps especially for one family. 
  
Levi Burroughs, 8, whose body was found last Wednesday suffered from a rare illness called mucopolysaccharidosis or MPS for short. 
 
So does 20-year-old Kaitlyn Huff who says the news of Levi's death has inspired her to share her story
 
"They'll have small claw like hands with thick fingers," said Priscilla Huff, the mother of a woman living with MPS.
 
Kaitlyn Huff's dwarfed stature and piercing voice may hint that she isn't your average 20-year-old.
 
"When I was younger I didn't even know there were older people with my type," Kaitlyn said.
 
MPS is an illness so rare that some doctors she visited hadn't heard of it.
 
"Doctors always told me, the pediatricians said she'll grow out of it," Priscilla recalls.
 
Only, with this progressive disorder, waiting could result in permanent damage to organ systems, physical abilities and mental development.
 
"If you think there's something wrong just keep being persistent," Priscilla said and her persistence would pay off.  
 
Kaitlyn was diagnosed with MPS 6 when she was three-years-old and immediately began treatment, making Kaitlyn the first person at UVA and in the state of Virginia to have stem cell transplant surgery.
 
In spite of her many treatments, surgeries and procedures which include: stem cell transplant, chemotherapy, repair work on both hips and knees, gallbladder and appendix removal, Kaitlyn says she wouldn't go back and change a thing.
 
Now, Kaitlyn is living a very active life.  She's taken up horseback riding and she even joined her high school cheerleading squad.  She is now focusing her energy on advocating for others just like her.

 

Kaitlyn says she hopes sharing her story will bring light to MPS and will help others diagnosed with this rare illness know that they aren't alone.