I was cruising along posting all kinds of images, and then it went silent here on the blog.
Dean received a call very early in the morning a few weeks ago that his mother in West Virginia had passed away in the hospital that she was taken to approximately a week earlier for an evaluation. You see, she was diagnosed with early onset Alzheimers in 2013, just as his grandmother and great grandfather also suffered.
Alzheimers, especially early onset, is such a devastating diagnosis, and is often ignored or overlooked as so many think it’s “just” an elderly disease. Early onset Alzheimers may begin to show in someone as early as 40 years old, and can completely mentally incapacitate someone as young as 50.
Last year, Dean had contacted a doctor at Johns Hopkins who was interested in doing genetic testing as early-onset Alzheimers is hereditary. The problem is, it is difficult to pinpoint the exact mutation. It was suggested that at her passing, we have Hopkins test her brain tissue to zero-in on the exact genes involved and thus the rest of the family could be tested for that specific mutation.
We were told that this type in particular gives the offspring a 50% chance each of having the gene. If one has the marker, there is a 100% guarantee that they will develop this early-onset Alzheimers. Each child from that affected parent has a 50% chance of having the gene; however, the first family member that did not acquire this gene mutation will not pass it to their children.
Because of Dean and his three children – totaling four family members in question. I tried to work quickly and carefully in my dealings with Hopkins as I was not close to my mother-in-law. She had moved to the mountains right after Dean and I were married 20 years ago, so distance kept us all apart. I felt it was my responsibility to deal with this touchy subject as I could keep my emotions relatively out of it.
Hopkins started working on the process of acquiring her from the hospital in West Virginia, bringing her in to Baltimore to retrieve tissue, then she would travel back to continue normal proceedings. Unfortunately, right before the window of opportunity would close for viable tissue, Hopkins backed out, stating that because of how quickly her mental capacity deteriorated, that they could be looking at more than just that gene mutation, and they would be unable to make this happen. Personally, I think it was a budgetary decision, and I get it – business is business, but it’s just extremely unfortunate to the rest of the Otte family that we were unable to get a conclusive answer on any of our family regarding this horrible genetic anomaly. But why can’t we just have these genetic tests done? Because the mutations and genes involved are unable to be identified easily when it is unknown if someone is affected. The cost to isolate this exact mutation is astronomical.
It has been heartbreaking helping Dean to deal with his mother’s passing and everything involved in being the only heir. Much of it, I cannot comment on publicly because there has been an investigation that started prior to her passing. Taking the trip down there was nothing short of a mystery novel, having to sit down with state agencies/departments and learning things that we had no idea about. Every new person that we came in contact with had another piece of the puzzle. The puzzle is still not complete; however, we are doing his best to take care of everything, it’s just a very slow process.
I didn’t know June well, but I am so sorry for her passing and what her life had been like for the past few years. I wish she had come back to Baltimore years ago and things may have been very different. It is, however, a little comforting knowing that she is at peace. I enjoyed meeting Dean’s extended family, seeing pictures of her when she was very young (wow, not only could you see so many of Dean’s features but Erynn as well – I’m pretty fascinated with genetics), and I need to thank her for giving Dean and myself a little gift – time… our little trips down to the mountains have been a much needed break from our busy lives being alone together and growing even stronger in our relationship…. and no matter what our futures hold, we have each other’s backs….