A friend asked me recently, “What is your greatest fear in life?” Without hesitation, I choked out, “That my children will get this crappy disease.” My body curled into a fetal position, and I cried.
My husband has a rare, terminal brain disease called Frontotemporal Dementia (FTD). It can occur spontaneously or in 40% of the documented cases passed genetically.
My husband and I met with a genetic counselor a few weeks ago to discuss the genetic link in this disease. I started with saying that I was 99% sure my husband’s father had this disease (based on 168 pages of medical records we miraculously were able to retrieve from the VA hospital). The counselor replied she was 99.9% sure his dad had the disease. This was crushing, but at the same time affirming, as there was still the thinnest thread of doubt spun by those closest that his father was actually afflicted with diabetes, schizophrenia, too much drinking, early onset Alzheimer’s or any number of other explanations that never seemed to fit. My husband has the only documented case in the US of this particular gene mutation code on the MAPT gene. It is absolutely mind boggling.
The counseling appointment was one I had waited and pushed to get for eight months. Our local neurologist had ordered a very sophisticated genetic test for my husband. Finding a gene mutation would confirm his disease and pave the way for future disability claims. The implications were much bigger than that, though. This disease can be genetically passed to our three sons. We learned this devastating news without any genetic counseling. At the risk of digressing too far here, this test never should have been ordered and the results shared with us without that counseling. There was already plenty of supporting evidence that my husband had the disease, and it had been passed from his father before ordering the test.
The genetic implications of this disease is grief that I have compartmentalized. There is no way I am ready to process FTD having been passed to my children. Yet, the most pressing question from my children on a near weekly basis is, “Will I get this disease?” It’s a question that has to be answered, carefully. The answer has the potential to chart the rest of their lives.
“Will you test the kids?” and “What are the chances your kids have this disease?” are the questions most commonly asked from friends when talking about the disease and the topic of genetics is raised (which is often). Stop asking these questions, please. But, more importantly, stop telling my kids to get tested. Legally, they cannot be tested until they are 18 years old. This is not like testing to see if you have a higher percent chance of developing breast cancer. If you have the FTD gene mutation, there is a 100% chance you will develop the disease. 100%. Your fate is doomed. There is no treatment or cure. And, this disease is ugly – one of the ugliest. My kids live with it every day. They do not want any part of it. The odds of having the gene mutation are higher than any parent can tolerate. Heck a 1% chance would be tough for a parent.
So, what do I tell my kids when they ask if they will get this disease?
I say you have a higher chance of getting the disease than the general public.
I say you could walk out the door and get hit by a bus today. No one knows how long they will be on this earth.
I say live your life every day. Do not pass up any opportunity that comes your way to do something fun or adventuresome.
I say have kids. Be a dad. There is a lot of life to live and being a parent is a tremendous joy.
I say pick your wife well. You will need someone that is willing to walk to the ends of the earth for you. Pick a woman that won’t leave you when the times get tough – if they do.
I say be kind. Other kids are struggling, too. Other kids worry about what they may get from their parents. You are not alone.
In the future, when the time is right, what will I tell my kids?
I will say it is your choice and yours alone to be tested. I will say that a lot of thought and counseling needs to occur before you choose to do so. This information is a huge burden to carry forward.
I will say that there is testing that you can do to prevent passing this on to your children. Investigate your options.
I will say that I have your back on any decision you choose to make in terms of fertility donations, adoption, or embryo / fetal testing.
I will say that I am sorry. I didn’t know. We didn’t know. And despite my best efforts to protect you, in this instance, I could not.