Things have been going very well between Kat and I and as a result, we have had been talking about family and our future. Because she was at risk for Huntington's disease, and it's a fatal disease with a 50/50 chance of spreading to her offspring, we submitted her blood for testing before we went on vacation to Jeff's wedding in June. She wanted the results before we left but, I was confident that the result would be negative and that God wouldn't screw me after all my family and I have been through in life. After all, I finally found real happiness in life and someone that loves me for me...why would God take that away. The Monday after we got back, we went in for the results and my life changed. She tested positive for Huntington's disease. I felt like I got hit by a car. I couldn't believe it. The person I loved and that truly loved me was sentenced to a horrible death. God is going to take her from me. I looked at Kat and I knew that she was prepared for this answer. She had been preparing all her life. I had only 4 or 5 months but, I wasn't prepared at all. I was so absolutely positive that she wouldn't have the disease that I didn't prepare myself. The prognosis is an estimated onset of symptoms in 10 to 20 years but, it could come earlier or later. Generally onset is between 30 and 50. There is a study medication that she is going to start that may or may not delay the onset of the symptoms i.e. prolonging the time she has for a normal life but, there is no cure. It will take her at some point but, if that's when she is in her 80's or 90's instead of 30's or 40's, we'll take it.
One of the major issues that we have been working through is the impact on having kids. I have worked all my life to be able to have and provide for a family and can't see myself spending the rest of my life without kids. The saddest part of all of this is that Kat wasn't even considering having kids until she met me. Now she can't see her life without them and she's having a real hard time dealing with the possibility of not being able to give me kids for fear of sentencing them to death. Her Dad died from HD and Kat saw what it did to him and their family and can't sentence her kids to that type of life.
We love each other and aren't prepared to give that up without examining all possibilities so, we are continuing are relationship as if we never heard the test results, at least until we get all the facts and have exhausted all resources. Then I face a very hard decision. There are three possible options with regard to have kids.
- Adoption but, it can be expensive and very difficult to adopt an infant.
- In Vitro Fertilization with genetic testing. Cost is about $20K per try and there is a small percentage that the child would develop some other abnormality such as Downs Syndrome due to the genetic testing procedure. Lots more research is needed regarding this procedure.
- In Utero testing. Normal baby making process(fun way). This procedure is much less expensive and can be done when the fetus is 10-12 weeks old. The ethical choice is a tough one though. If it has HD, then do we abort???????
December 26th is our one year anniversary and I feel so conflicted.
We have a very hard and painful road a head but, with all our family and loved one's, I'm sure we'll make it....well at least we'll try. I'm not sure about much of anything anymore.
What is Huntington's Disease?
Huntington's disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent generations. A person who inherits the HD gene will sooner or later develop the disease. Whether one child inherits the gene has no bearing on whether others will or will not inherit the gene. Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have difficulty feeding himself or herself and swallowing. The rate of disease progression and the age of onset vary from person to person.
http://www.hdsa.org/about/our-mission/what-is-hd.html
