Hi.

This isn't a how-to. I'm not a pinterest mom. I'm a firm believer in faking it 'til you make it. This is for all the millennials out there who secretly have no idea what they're doing. I'm looking at you, millennial caregivers. 

My Results

At some point in my lifetime I will develop Huntington's Disease. 

Yes, it's scary.  And, no, I will never forget the moment when they told me. I will never forget sitting there sobbing in that little room. 

Of course it isn't the outcome that we had hoped for, but, oddly, I feel a sense of relief. I have my orders.  We will fight for a cure. HD is no longer just the disease that my mother has, but it is also the disease that I will someday battle.  Now all we can do is move forward and fight to create the best life possible for our little family. 

My CAG repeat is 42. On the scale of Huntington's Disease, that is luckily on the lower end.  The CAG repeat dictates whether or not a person will develop (and potentially pass on) Huntington's Disease. A gene with 40 or more repeats is called a full penetration gene. These repeats can sometimes be as high as 150 or more. The higher the CAG repeat, the earlier the onset of the disease. Again, although my number puts me in the full penetration category, I'm thankfully on the lower end of the scale. Statistically, I should have another 20-25 years before the onset of the disease.  So, statistically, there's another 20-25 years for the world to find a cure. 

Of course these are just statistics and I'm in no way guaranteed these years, but I should be living a symptom free life for many years. I have to believe that there will be a cure or some sort of powerful treatment by then. 

We are ready to start the process of IVF with genetic testing. Our babies will never know this disease.  They will never have to feel the overwhelming fear that I felt. And, hopefully, by the time I begin to develop symptoms, there will be a treatment and they will never have to watch my decline. 

I'm sure there will be many more tears and plenty of moments when it's a struggle to get out of bed. But, right now, we're okay.

I have the gene. Unless there is a cure, I will someday develop Huntington's Disease. We will be okay. 


Well, Here We Are.

One Day