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home : community : community January 29, 2022

9/9/2014 12:16:00 PM
Carnival For A Cure
Saturday, September 20th in Dallas

Wayne Howard
Reporter


We've told you before about Abby Ferguson.  Abby Ferguson is a 9-year-old from Dallas who has Sanfilippo Syndrome. It is a rare and at this point incurable disease.

Until Abby was five years old, her parents didn't know if she had problems or had simply arrived at  a point where her growth slowed.  Doctors weren't sure either.  It was until doctors at UNC Hospital in Chapel Hill gave them the diagnosis when she was eight that she had Sanfilippo.  Abby's mother Wendy is an ER nurse at CMC-Lincoln but she was not familiar with Sanfilippo.  Almost nobody is unless they've had a child affected.  It's a genetic disorder and it's extremely rare.

Most children who have the genetic problem do not live far into their teen years. A child with Sanfilippo starts out normal, but as the genetic problem presents itself, they begin reversing. At first, they may simply stop growing...then they may start losing abilities they had already developed--they lose the ability to walk, talk, potty training is reversed...the disease progresses until they become completely disabled and sometimes have seizures and other terrible problems. If no cure is found, the only outcome is death--almost always by the mid-teen years.

Genetic research has shown some promise but to continue the research and begin human trials will cost millions. Since the disease is rare, there isn't a lot of money to be made by a drug company that might come up with treatments..and governments tend to spend money on diseases that affect millions instead of rare ailments like Sanfilippo.  That's why parents like the Fergusons are trying to raise money to fund the research.  

A CARNIVAL FOR A CURE will be held on Saturday, Sep. 20th at the 1st UMC in Dallas. If you are in the area, please come. If you have other plans (like the Apple Festival in Lincolnton, etc.), please visit the ABBY GRACE page on Facebook or the Abby Grace Foundation GoFundMe page at https://www.gofundme.com/abbygracecure.

The Fergusons know that for Abby, time is running out.  They pray for a cure, but if that doesn't happen in time for Abby, maybe their efforts can save someone else's child and spare another family this heartbreak.  





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