Skip to main content

In memory of Kirk

This morning Sheena, well-known in the HPS community as a great friend, source of support and an all around inspiration, lost her dear brother Kirk. Kirk was 37 years old.

Sheena and Kirk are examples of just how much work is still to be done by science. They tested negative for HPS, however, they had so many similar issues that they fit into the HPS fold very well. When it comes down to it, when you’re sharing life experiences, especially experiences coping with health issues, who really cares which gene caused the issue. It’s important for science, but not so important for moral support.

Sheena has been very active on the HPS Yahoo group and we all love her like a sister. But none of us could ever be Kirk. There’s a special bond that siblings can share. Sheena and Kirk have battled a lifetime of immune system problems, GI problems, bleeding problems etc together. Both have spent large parts of their lives in hospitals. Both are survivors of the highest order.

Kirk was an inspiring big brother. He was determined to never let his health issues get in his way or keep him from his dreams. He ran his own business and was a loved friend, brother, husband and son. All you have to do is read the comments left by the more than 200 people who have followed his story on Facebook to know what a loved man he was.

My heart breaks for Sheena. My brother and I are close, and I can’t imagine one of us ever losing the other one. It’s one of the things that motivates my work in HPSland. My brother is still largely unaffected by HPS and I’d do anything for him. I’d do anything to keep it that way.

Sometimes words just can never do justice.


Comments

Anonymous said…
What a beautiful tribute to Kirk. We knew Kirk mostly through Sheena. We knew he was a strong man with a drive to be the best he can be regardless of his health issues. I would also like to mention that his wife was a strong lady too. She was there for him through all his triumphs and the serious health issues. My heart goes out to Sheena and her family and very importantly, his loving wife.

Julie

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...

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria...

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.