Skip to main content

St. Louis

I’ve been without internet access for the past five days. I think I’m now officially a junkie. Boy have I been craving a connection!!!! It’s so hard to be out of touch with all of you.

My mom and her sister (my aunt Phyllis) came up to Kansas City and picked me up on the way to St. Louis to see my great aunt (my grandmother Cockerill’s sister) Ched. We call her Ched, although I think her name is actually Mercedes.

We had a wonderful time. Aunt Ched is like the energizer bunny. I know I have chronic fatigue issues, but it’s still a little embarrassing when an 84-year-old woman is running circles around you! Ched had planned out something special to go and explore every day. Of course, I took as many photos as I could, although many were from the car window.

I so wish I’d brought something to record aunt Ched with and taken the opportunity to actually interview her. I was so busy trying to clear the time to be away that I just didn’t think that far ahead. Ched was full of stories about family in Puerto Rico, many of which I hadn’t ever heard from my grandmother. There’s a big age difference between them, so I guess they were close to different parts of the family.

My one-track HPS mind of course kept thinking of genetic family trees the whole time, and how much I’d like to reach out to distant third and fourth cousins in Puerto Rico (who have no idea who I am) to make sure they’re aware of HPS. What are the odds I have a distant cousin I don’t even know about in our HPS community? I’d say pretty good.

I also downloaded a ton of photos from my mother’s camera of her trip to the Canadian Rockies last summer, and her trip to France this spring. You know me – I’ll be annoying everyone with those too. I’m constantly trolling for great photos for my artwork file!

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