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In memory of Blanca

This evening I received the following note from my friend Carmen. Carmen is so right. As the 100 People Search continues to try to help people with Hermansky-Pudlak Syndrome, sometimes we find people that have such advanced disease there isn't much we can offer other than support.

Carmen and I both feel that it's important to honor everyone that passes away from HPS. Each and every one of them are part of our family. Each and every one of them has played a part in helping all of us with HPS. We learn something from everyone's stories. These are the people that have gone before us and have made life better for those of us left behind.

Over the years I've lost a number of friends with HPS. I consider each of them a special gift. Each of them has touched my life and I wouldn't trade those friendships for anything, even though it can be hard to watch your friends getting sick.

Here's what Carmen writes about Blanca. I never knew Blanca, but Carmen spoke with her often.

Hi Heather:
Since conference we have been on the Hundred People Search and that search has taken us to many people. Well, what I found is that as we are meeting so many HPS’sers and we are able to make a difference in their lives, we are also finding those for whom is a bit late to be of help medically speaking.

I do hope that the small contact we have with them is enough to let them know that they are not alone in this HPS journey.

Over the weekend I got some sad news. One of our new friends passed away.

Blanca was 35, a wife, and a mother. She was very sweet and even with very low PFT”s, she was always upbeat and glad to talk. You would never guess that she was on oxygen when you spoke to her. She was hoping to move to Chicago and be listed with a transplant team at a local hospital. Unfortunately, Blanca did not make it.

I am sad, and I know this news will make other people sad, but we need to honor Blanca’s memory. She is not going to have the benefits of all this research for herself, but she helped the rest of the HPS community. Her footprint will be there forever in my heart and in the hearts of those who knew her and loved her. I wish she had more time, I wished she was able to make it and have the transplant; I wish she could still be with her family. Now, I wish that she is in peace, that her family is strong and that they have the strength to move on. God bless you Blanca and God Bless your family.
Carmen
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