Richland Family Shares Story, Raising Awareness for Fragile X - NBC Right Now/KNDO/KNDU Tri-Cities, Yakima, WA |

Richland Family Shares Story, Raising Awareness for Fragile X

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RICHLAND, Wash. -  One Richland family is working to raise awareness about an inherited intellectual disability after finding out the syndrome hits close to home.

Michelle Hall's 5-year-old son Jacob appears to be a seemingly healthy, perfect little boy. However, Michelle recently found out Jacob has Fragile X Syndrome.

Fragile X is an inherited genetic mutation that causes intellectual disabilities. The syndrome delays a persons speech and language development and often includes a variety of physical and behavioral characteristics, including an elongated face, large ears, and hand-flapping.

Jacob is not the only one in the family to suffer from Fragile X. His younger brother, 3-year-old Cameron, also has the syndrome.

"I treat them like any other kid. They want to be like any other kids. They see other kids, they want to play, they want to socialize, they just have a harder time talking or communicating," said their mother, Michelle Hall.

Michelle's sister-in-law, Sarah Hall, is a Genetic Counselor at Kadlec Regional Medical Center in Richland. She says she is very familiar with Fragile X and every case is different.

"Not all people with Fragile X syndrome have those classic features that we can see. Even in my own family with my nephews, Jacob has more obvious Fragile X features to me than Cameron does," she said.

Sarah says men are carriers of the Fragile X gene and pass it along to their daughter. If that daughter gets pregnant, there is a 50-percent chance her baby will be born with the intellectual disability.

Michelle says she loves her children very much and she would not ask for anything different.  "The sky is the limit with these children. So, I want to make sure that I give them everything I can.  Hopefully they will hold jobs and be able to live on their own one day, but you know that is to be seen," she said.

Doctors recommend that pregnant women and women who are trying should get a Fragile X blood test to see if they are a carrier.

To raise awareness and funding for a cure, The Mid-Columbia Chapter of the National Fragile X Foundation is hosting its first ever Hike for Hope, June 1st at Badger Mountain Trail.

The local chapter is also looking for sponsors for the event.

To find out more about the Hike for Hope or to become a sponsor, contact hikeforhopetc@gmail.com

 


 

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