Skip to main content

Family hunting


I’ve always had an interest in genealogy. I haven’t done anything about it really. Never had the time I guess. Perhaps it’s because I’ve always been a fan of studying history. Finding ancestors somehow feels like a personal connection to the past, as if the DNA populating my cells has some sort of time travel awareness of what has gone before. Of course that’s crazy.

When I was diagnosed with Hermansky-Pudlak Syndrome my interest in my roots, especially my Puerto Rican roots, intensified. Maybe it was the realness of mortality or the connection between my newfound fascination with genetics and how it connected me to my family history.

For years I’ve thought about whomever in my family tree might have had HPS. They would have lived so long ago that they wouldn’t have known what HPS was. It wasn’t really identified as such until 1959. My grandma Cockerill, whose father was from Puerto Rico, talked about relatives in Puerto Rico she heard about as a child that had died of tuberculosis. Could any of them have had HPS? Could doctors 100 plus years ago have thought pulmonary fibrosis was TB?

What about my non-Puerto Rican roots? Someone on my dad’s side of the family somewhere must have had HPS. Who was it? How long ago?

These HPSers in history...what was it like to live with HPS that long ago? What were they like and how did HPS impact their life stories?

As my involvement with the HPS Network became deeper and deeper and I was fortunate enough to go to Puerto Rico several times for HPS conferences, I would look at the crowd assembled and wonder who among the audience might be related to me. It would likely be a very distant relation, but the odds are that someone out there, someone else with HPS, is a distant cousin.

I hopped onto Ancestory.com the other night. Joining is not in my budget right now, but it lets you do a little bit (to entice you join I’m sure) and up popped a photo of my great grandpa from Puerto Rico. Someone, someone related to me most likely, must have uploaded it.

I then saw that you could upload not only documents and information about yourself (if you join) but you could upload an audio or video file. Wow! Now my imagination has been working overtime all week. I wonder how long those files stay up? Imagine someone researching their family tree 100 years from now and being able to not just find public records, and maybe some photos if they’re lucky, but an actual video or audio file of their ancestor actually speaking to them. Speaking, as in with words directly. Wow!

I’m not sure that this is the case. I haven’t really had a chance to look into it. But, if that were possible, what would you say?

I don’t have children. After I’m gone, the next generation of family will barely have known me. I’ll be this little tiny branch sticking out as a dead end on the family tree. No one will feel that kind of connection with me most likely. But, if I were able to speak to them – maybe that would make my little branch more interesting. Maybe it would make someone in the future feel some sort of connection with me.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect