The gift

Recently, I was talking to a friend while I was tooling around for my birthday. I had not seen her in a long time. I found out a physician I worked with (a friend of her family's due to a hereditary neurological disease) had asked her mother to donate tissue upon her death.

D. is  from a large family (over 10 children) in a rural middle of the country state. Mom is still doing her own thing at nearly 90. She does, however, have several of her children as her healthcare POAs. D. was unsure about Mom and the donation.

Since I know D. has the same disease as Mom, we talked about Dr. S. and the research in her lab and the family dynamic. D's elder sister (who is one of only two children who live near her mom) is absolutely against any donation for scientific purposes.

I listened and D. asked what she should do. I simply told her, "D, you need to talk to mom and if necessary, have Dr. S. do the same. She has already put a name and a face on this disorder you have through her cooperation with the global research team Dr. S. works with. It is her choice, but she needs to know that when she dies she can leave you and the rest of your family a gift. The gift of material for researchers to work with in their labs. Someday, your grandchildren may one day get a vaccine that would assure the great-grandchildren and their children never suffer what you do because of Mom."

I know it is hard, but I hope she will understand. It is a gift that no one else can possibly give in the near future.

Unfortunately, for D., one sibling thinks this will delay the funeral, cause them to not have an open casket and be upsetting to the other children. This sibling also "thinks doctors are all quacks." To add insult to injury, D's sibling did not inherit the disorder she and four of her other siblings have.

I'm just hoping this holiday season, Mom comes to realize, through my friend, Dr. S., or through one of her other children and grandchildren the potential of the gift.

Memories for me, too

Grumpy had a post recently called Memories that made me think about this disease. We had a family friend die of this horrible disease.

Hopefully, one day, there will be a cure.