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Added on Sat 2nd Mar 2019 12:18pm   Last edited on Tue 5th Mar 2019 6:42am
#1

Ebony Clemmons

Posts: 6
Location: Chicago
Member since: 19/02/2019

Hi, Im Ebony

Hi, I'm Ebony Clemmons.  I live in Chicago with my wonderful husband, Nick, and my adorable son, Darius (even though he hates being called adorable).  My preacher pointed me in your direction because I'm dealing with a genetic fatal disorder called Huntington's disease and I didn't know where to turn.  I've seen a genetics counselor, but it's the fear and the emotional stuff that's hard to handle.  People with this disease have a 50% chance of passing  it on to their children.  We got Darius tested at 18 years old and I was absolutely heartbroken to learn that he would not be spared.  I didn't put my child at risk on purpose!  My brother and I were adopted and had no knowledge about our possible genetic health as it was a closed adoption.  My brother started having symptoms which eventually prompted him to see some specialists.  He thought it would turn out to be something simple to fix, but got the news that he had HD instead.  That's what prompted me to get tested.  

This disease has changed my entire outlook on life.  I used to be staunchly pro-life feeling that abortion was morally wrong.  That changed when I learned that I  passed Huntington's disease on to my child.  I'm not certain whether termination of the pregnancy would be the more merciful choice, but I now understand why some women make that choice when they learn their child will be born with a debilitating disease.  Sometimes people judge me for having a child when they don't know my whole story so I decided to be proactive here as I hope to settle into your online community.



Added on Sun 3rd Mar 2019 2:21pm   Last edited on Sun 3rd Mar 2019 2:21pm
#2

Randall Green

Posts: 17
Location: South Bend, IN
Member since: 14/10/2018

Ebony, thanks for sharing your remarkable story with us.  I know it might seem like a trite response, but I really am sorry that your son inherited Huntington's Disease and I hate that you're dealing with the guilt and the fallout from that.  One thing for sure though, Darius has a supportive, loving mother who will help him through it.  Having someone in your corner makes a big difference!  Welcome to our corner of the internet.  I hope you'll stick around!

Added on Tue 5th Mar 2019 6:42am   Last edited on Tue 5th Mar 2019 6:42am
#3

Heather Miller

Posts: 40
Location: Illinois
Member since: 4/08/2018

Hi Ebony,

I'm glad you found us. I'm sorry some people are judgmental. You made the best choices you could with the information you had. I'm sorry your son also carries the gene for the disease. It's got to be very hard on both of you knowing that he, too, will have this disease someday. 

I have found this community to be very supportive and welcoming. I hope we can all make you feel like part of the family here. I look forward to getting to know you and walking your journey with you.